2017 reflections

As I reflect back on 2017 I am filled with gratitude for the changes, challenges, and the many blessings. The beginning of the year was a shift for me as I went from full time to part time work in an effort to get Bentley settled at the private school the kids attended. He and I had a great time! I took him to two different horseback riding facilities and we volunteered at an animal farm on a weekly basis. During the Spring we decided to list our house on the market and look at homes in a different school district. As many of you know, Arizona ranks among the worst states for education- combine that with a child with a disability and it’s a real disaster. After a couple years of spending endless hours looking at schools and doing research we decided that moving to the neighborhood with the best schools - schools that are known for inclusive practices for students with disabilities- became a priority- especially as we consider long term relationship building. And so Bentley and I spent time preparing the house to be listed and then we spent time house hunting! He was a great buddy to have with me. He gave me his opinion on each home. He also continues to look at houses online and out the car window and I think he thinks we might move annually! Crazy kid! 

 We managed to sell the home on Lee Street and move over to a part of town that’s located by Sabino Canyon. We spent two days moving our things over and then locked the house and took off for a 3 week road trip. We drove to Traverse City, Michigan in two days and spent time with our dear friends up North and also spent days in Detroit visiting many other beloved friends. The kids soaked up the fresh Michigan water, collected sand in their toes, and discovered lightning bugs all over again! David and I don’t regret our move to Arizona, but we do respect it- meaning it was a painful move and we left a lot we had built- returning is a reminder of those losses and an opportunity to reconnect. From Michigan we drove to Colorado and attended Adam’s Camp for the 2nd year in a row- and we have our registration in for 2018! We have found Adam’s Camp to be a sacred place for our family. It’s located at the foot of the west side of Rocky Mountain National Park at a sprawling YMCA camp. We stay in a yurt- sign up for lots of activities and enjoy time together. Adam’s Camp was started by families who realized intense therapies for kids over a short period of time can result on great gains in their lives. Bentley was in a group with 3 other kids with Down syndrome, a school psychologist, a PE teacher who specializes in kids with disabilities, a speech therapist, and 2 volunteers. They do all kinds of activities like swimming, rock climbing, hiking, zip lining, tubing down a giant hill, and they even get to have an overnight! Lily and Clayton attended the siblings program where they do similar activities and work with a psychologist on discovering the strengths and challenges of their sibling, and learning to express themselves to their parents about what their needs are and share where they feel like they aren’t being seen or heard. David and I hang out with other parents- hike, rest, and attend workshops. We love Adam’s Camp! In addition to this road trip we also were able to visit Portland and stay on the Oregon coast with my mom and Kathryn. We continue to go camping- this year finding a sacred secret spot on the Baja peninsula! I think my favorite place in the world is about 7 hours south of us where we spend all day in the sand and in the water and fill our bellies with fish tacos! This is becoming a great place for us to take visitors!

The kids are now at the local school and they take the bus! They are doing really well. We are happy with their teachers and with the school in general. We rest in knowing that we will advocate and push to make changes in this district and the once looming thought of just finding another school option has disappeared. Phew!

In addition to school the kids continue with their favored extracurricular activities. Clayton finished Book 1 of Suzuki guitar. He went to a special camp with his grandma last summer. He is currently in gymnastics- tumbling and trampoline class- but he is eager to start soccer!

Bentley continues to ride horses, do gymnastics, and have speech therapy in the home. He attended a fabulous bike camp last summer and made it in the paper!

Lily continues to play and create games whenever she can! She also started gymnastics this year. We will see what other activities she wants to do in the future! She might start playing violin soon. 

David continues to thrive at his job. He is a wonderful doctor. He is kind, patient, and the families love him. This year he has been part of two large projects. The first, began at the very end of 2016- a palliative care clinic for families with children who have serious long-term, health conditions. Palliative care focuses on relieving the child's symptoms and improving the family's quality of life. The second project- the Down syndrome clinic which began in October. At the Down syndrome clinic a small group of families come and are able to see the audioligist, opthomologist, physical therapist, nutritionist, primary care (David), social worker, and me! I go in with the social worker and represent our local Down syndrome group providing resources and support as a fellow mom! David’s patient population is primarily made up of Arizona’s medicaid program. Having the insurance they have has drastically changed the lives of their children. At a time when health insurance is being questioned and discussed so often we find ourselves advocating and supporting self advocates and families to keep their insurance. Many of the families have children on expensive life saving medications, and in need of supports that are costly- from wheelchairs, to specialized beds, and a variety of other things.

I am excited to share that I will be working part time with a local organization- across the hall from David’s office- named Pilot Parents! They have a grant to provide a program called Arizona Partners in Leadership. Parents attend for 8 weekends throughout 6 months. The topics include the history of the disability movement, inclusion, iep supports, community connections, person centered planning, assistive technology, state and federal policy, legislative process, organizing for change, and planning for change. I attended the program in 2016 and it was life changing! I am so honored and excited to be part of this project.

David and I found ourselves forced in the world of disabilities when Bentley was born in 2008. However, over the years we have realized that his birth was more than just a birth of life- but it was a birth of passion. I had no idea about the challenges and the injustices that families and individuals face. Our world continues to worship strength, independence, and wealth. People with disabilities continue to teach me that our value system lacks. I have learned to see that slowing down, realizing our INTERdependence, and looking to learn from others is so important. I am part of several social media groups that focus on families with children with disabilities- and many with kids with Down syndrome and I have found that many of us were afraid at first, but have quickly realized we are really the lucky few. I have also recently discovered my new favorite quote:

Normal is just a dryer setting. 

 In addition to our commitment to advocacy, medical care, love, and support we are finding self care in the form of running! We will be running our first marathon on January 14 in Phoenix. Though we won’t run together, our desire to see one another cross the finish line strongly is the same! I know we both find the solitude, peace, beauty, and challenges of running to be an important part of our days. We are thankful for the many who support our family both near and far. We are well aware of our own interdependence. We always love reading the letters and thoughts of others- and getting the beautiful cards! Sorry we didn’t get one out this year.

Cheers to a new year- 

 may we face the challenges, 

 soar through the good stuff,
and continue to fight for the injustices around us.

 Peace. 

 the crawford family

the longing for connection

We all long to connect. Connection is the way we know we are loved, we are understood, that someone cares for us.

Lately, I have been reading and listening to Jean Vanier. Jean Vanier started the L'arche movement- which are communities where people with and without disabilities live together. The homes are not meant to be organized by provider and patient, but they are a place where people live together in connection and equality. Some of us have more needs and need the help of others- that doesn't make someone less. The thing that we learn from loving and caring for someone with a disability that needs more supports than us, is that we realize that we, too, are equally broken. I took a small section from an interview with Jean... He says, "We enter into a communion of hearts. When I accept you just as you are. And you love me just as I am. I have no desire to have power over you. It's something else. When we begin to love each other something happens. We are so used to being above people or below people- that the whole reality of communion of hearts is so difficult to understand."

Community and connection teach us our humanity.... they teach us our equality, individuality, and that we are both in need. We live in a world that strives for speed and perfection. Get it done faster. Get it done cheeper. Be skinnier. Be better. Be bolder. Be anything. This mentality leaves many many people behind. It says that your value is only based on your product- what you do- what you produce- what you say- but it misses your value because you exist.

My son is bold. He's loud. He's funny. Ironically he is often judged when he is seen- Oh that poor child with Down syndrome. Oh that must be so hard.... but once you know him- you love him. I have friends with children who don't communicate with their words. Their children depend on someone wheeling them or assisting them walk everywhere they go. They need interveners to help them connect to the world around them. These obstacles- these needed supports- they don't make them less. They make them human. When we stop the speed, we are then able to hold the hand of a person and feel them wrap their fingers around you. Their form of communication is the whisper in the hand, and if you're not careful, you might miss it. Their form of love is the nudging of their face on your skin- or a soft smile as you push them gently on a swing.

My three children demand your attention. If you come into our home you are greeted with big hugs and big smiles and big laughter. The way they communicate is loud and clear. Yet that doesn't make them better- or happier- or more able to connect- it just makes your initial connection easier. The depth that you get from my children will take work. It takes respect. It takes time. Similar depth will be found with those who cannot speak- whose communication is more discreet- but it is there. And the initial connection that you might have to work harder for- will also come. It will look different, but it won't feel different.

Connection is the knowledge that you are safe- that we are safe with one another. For children that means that they know they can count on you. They know what is expected. They know that you are interested in them.

Often times communities are based on a similar ideology or value system. They might have scriptures they follow, or books they read together, or things that they are interested in. L'arche communities are not based on these things... Jean says, "L'arche is not based first on the word. You find a lot of communities that are based on the word-that is to say we speak of an ideal together. But L'arche is based on body- and on suffering bodies. They are seen as useless. We welcome those who are apparently 'useless'. Our suffering brings us together. If someone comes to our community and they are severely handicapped- what is important? It is important to see that the body is well. Helping people bathe or dress or eat. It is to communicate to them through the body. And then as the body is comfortable, then the spirit can rise up. There is a recognition, a contact. We've seen this in our people." It is in this community- or these types of communities- that love begins to grow.

When I thought about having children before mine were born, I never considered how I would connect; I simply knew that I would connect with them. Over the years I have not really verbalized what it means to connect with my children- specifically with Bentley. I have found ways that I feel connection. Recently I have started reflecting on the things that Bentley and I do together. We love to be around animals, we love to ride horses, we love to eat good food, we love to ride bikes, we love to watch movies, we love to jump on trampolines.... As I began reflecting on these things I realized I had introduced him to all the things that I love. Clayton and Lily have developed interests apart from me- but Bentley's interests have grown from me and are connected to experiences that I offered him. I can sit and have conversations with Clayton and Lily. I know what they like- what they don't like. They express themselves very articulately. They listen to chapter books and think about them long after the chapter is over- making connections throughout the day. They understand money and time- that there is a limit to both of these things. Bentley and I don't have long conversations- everything happens in the moment. He communicates with his body how he is feeling. If he's upset, things are getting pushed over. If he's happy, he's glowing. If he's feeling anxious or fearful he is refusing. There aren't long conversations. When Bentley and I ride a bike together or jump on the trampoline, or go out to eat- we are fully connected. I don't compare the experience to one with Clayton or Lily. It just is. Connection with another is the fullness of love in the moment. Bentley is extremely emotionally intelligent. He senses the world around him. He knows when a child is sad- and if he can fix it by offering a hug or a toy- he will. He knows when people love him. He knows when people are annoyed by him. From the age of 2, I was able to tell who did well with him and who didn't. If a person struggled to connect with him, Bentley made me aware. He didn't make me aware with his words, he made me aware with his behaviors. I find it interesting that the label of intellectual disability assumes his intellect is subpar- his ability to memorize or solve complex math problems or to interpret poetry will probably not develop- but his ability to know people, to read their body language, to offer kindness, empathy, and to offer space to be with him- those things he does so well. It is assumed that people with disabilities don't connect. We assume that our intellect is tied to our ability to connect. I know this isn't true- we connect because we are human. Last year we went camping with several families- we all have kids with special needs. What I lack in words can be seen in this video- Here is a short clip from the beginning of that trip: My passion for writing about connection is because I know that it is missing for a lot of people. Adults with disabilities often stay inside- they struggle with depression- the lack friendships outside their support systems which generally consist of family and paid providers. If we believed that people with disabilities longed for connection we would live differently- at least I hope we would. My passion for inclusion in childhood is in part to avoid isolation in adulthood. En fin, we all long for connection. We all long to know and be known. We should consider what this means in our lives and work towards connection with others. My challenge is to look around you. Where are the people with disabilities? Are they at the end of a hall in a school tucked away in a room? are they part of your child's class? Do you live in an inclusive community where you see people around? If you aren't seeing a wide range of people with disabilities, you have to ask yourself- I have to ask myself- why is that? And can I do anything to change that? My guess is that if we aren't seeing people, they're hidden- and they're often hidden because it's easier than dealing with the stigmas- so we have to change culture. Is it OK if things take longer at the bank because a person needs more time to count the money or fill out the form? Is it OK if the line at the grocery store takes a little longer because the checkout person needs more time? Is it OK if your child is mixed with kids with disabilities and the teacher might need extra supports to meet their needs? Is it OK if your pastor's sermon isn't quite so intellectual so that it can meet the needs of all the members? We have to think about the ways that we are living and consider if they're welcoming to all of humanity or if there just the most efficient ways to get what we need to do... done. Let's consider this, friends- Bentley and hundreds of thousands in this country depend on it.

“A community is only being created when its members accept that they are not going to achieve great things, that they are not going to be heroes, but simply live each day with new hope, like children, in wonderment as the sun rises and in thanksgiving as it sets. Community is only being created when they have recognized that the greatness of man is to accept his insignificance, his human condition and his earth, and to thank God for having put in a finite body the seeds of eternity which are visible in small and daily gestures of love and forgiveness. The beauty of man is in this fidelity to the wonder of each day.” -Jean Vanier

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.