the kid is alright

(I originally wrote this post a couple weeks ago and it has been sitting in my drafts- I recently read the article about the local Michigan doctor choosing not to provide care for an infant born to lesbian parents. Her choice is exactly why I originally wrote the post. I won't sit quietly and watch this happen. I am also so thankful that my husband would never refuse a patient based on their family's personal life choices. The challenge for me is that there are countless patients who belong to families who are far from perfect- who make personal decisions that she is unaware of and yet she still provides care to those children... When you draw a line in the sand about a certain conviction while still providing care to a whole other subgroup of imperfect people your stance feels much more like the pharisees and much less like Jesus. My advice- though no one is asking- if you're providing a public health service- treat people because they're people in need of healthcare... not because you agree with their way of living...)


my story

I was born in September of 1982. My father was a pastor and my mother stayed home with me. My parents didn't argue- we did family things. It was bliss. I was loved.

In 1991 my parents brought me into the living room to share with me that they would be getting a divorce. Tears ran down my little cheeks as I asked, "But why?"

The divorce was painful, as divorces are. I stayed with my dad and my mom lived across the country. I missed her.

In 1993 I noticed my mom had a wedding ring on her finger- my little 11 year old mind was excited about dresses and weddings and all things princess. My mom announced that she was getting married- to a woman. My first reaction- great! I hadn't heard of words like lesbian or gay or heterosexual. That summer my best friend had planned to make the trip across the country to stay with me. When she found out that my mom was a lesbian she decided not to come. I will never forget that feeling: the rejection, the sadness, the confusion. And that was the day I became ashamed of my mother.

My mom is my best friend. I love her beyond words. She is my encourager, my supporter, the one to whom I confide- she is exactly what I would hope in a mother. The early years following the divorce were painful because I missed her so dearly.

If you can remember the 90's then you can remember the fear of AIDS, the rejection of homosexuals, and the secrets that families had to keep. My mom was on the front lines of those coming out to their families.

My mother took me to volunteer in St. Paul, MN to the world AIDS quilt exhibit. I remember watching her cry after her dear friend passed from AIDS. I didn't understand what it all meant- but I knew she was passionate about it- and all her friends were so good to me.

Outside of the gay and lesbian community I swung back into shame. Friends dropped words like faggot and gay and my heart would sink. I remember when my mom gave me a check to pay for summer camp I tried to rip off the other name so my camp leader wouldn't know there were two women on my mom's checking account. After the rejection of my friend I decided I wouldn't tell anyone about my mom- and since she lived across the country it wasn't too hard. However, when I would spend all summer with her my secret required a lot more effort.

It wasn't until the end of 8th grade that I finally decided to tell some friends- and their reactions weren't so painful. Then in high school I moved in with my mom and so if you were my friend- you knew. Some of my friends chose not to stay the night or maybe some kids chose not to be my friend- those things hurt, but fortunately I had many other friends who accepted my family into their homes.

The reason I decided to write this little post is to draw attention to something that some might not think about. My mom is a lesbian- it is who she is- and you may have differing opinions politically or theologically- but she is a person who deserves respect. So when you are talking with your friends or posting articles or arguing about the rights of gays and lesbians- remember that people you are talking about are mothers, fathers, aunts, uncles, daughters, and sons- and even grandmothers! And I love my mother so deeply- and so when you say hurtful things about lesbians it cuts into the depth of my heart. When you reject gay and lesbian couples - you're rejecting their children as well. There are numerous occasions where my mother's choice was reject and the consequence was that I was rejected as well.  I can't change the minds of those who said hurtful things when I was a child- but I wish I could teach them to speak respectfully. Although sometimes even respectful speaking followed by rejection - like in the case of the local physician- is a reminder of how far we have to go...

The other reason I wanted to write this blog post is to release the shame that I have carried for so many years. My mother is a lesbian and her name is Adonica and her partner is Kathryn. And I love them. They are good to one another- kind to their friends- respectful of the earth- and they love me, David, and the kids well. And if you live in Portland, you should get to know them- it would be worth the effort. :)

Anyway- I am the kid- one of the products of the 90's- who quietly walked through the storm- and this kid is alright.

spurring hearts of generosity

Part of living in a major city is that there are homeless and beggars everywhere. A common discussion is what to do when you're asked for money. In Detroit I am asked for money every time I fill my car up with gas, every time I enter the freeway at Lafayette and 375, and various other places. The free part of me wants to invite the beggar over for dinner, give him or her a ride, or buy the person some food. The reserved side of me says no- thinking the person might just buy alcohol.

I read something once that encouraged parents when approached by someone asking for money to invite the kids into the decision. I loved this idea because I have found children to be very generous. First of all, it isn't their money. There isn't a sense of ownership or work involved- it's just money. Secondly, I have found kids like to be helpful. They are curious about people in wheelchairs, curious about those who act differently, and wonder why someone would ask for money- and they want to help.

So today I stopped on Woodward  to fill my car up with gas. Lily announced she had to pee, but I told her she had to wait until we got Bentley from school- about a 10 minute drive. I finished pumping the gas and went to drive away and she started crying that she really had to pee. So we pulled up front and I took her into the gas station. On our way out a man approached me in front of the kids- after warning them about the icy sidewalks- and asked me if I had any money. I usually say, "No I am sorry I don't carry cash." But I happen to have a quarter in my pocket so I handed it to him. I got the kids in the car and realized I had money in a drawer- my heart began to pound- the kind of pound that requires a response. The man was walking away- I thought I should chase him- but I hadn't entered the kids into the conversation yet. So I waited. He came back and began looking for cans in the trash. I said, "That man asked us for money and I found this money here in the car- should we give it to him?" Clayton's reply, "NO- I AM NOT DOING MY SEATBELT AGAIN." - I reminded him that he didn't have to move- I would share the money- I just wanted to know if he thought I should. Lily's immediate response was, "YES! WE SHOULD GIVE HIM THE MONEY. MOM, GIVE IT TO HIM!" 

So I got the money in my hand and walked over to the man in front of my van and I said, "Sir, I found this money in my car." He thanked me- told me he's been sleeping on the streets for 10 years. I didn't know what to say. I just walked back to the car. I probably should've said that it was from my kids- but I didn't rehearse in my head- so the words just came out.... 

When I got back to the car I praised the kids for wanting to share the money. 

"Mom, why does he need money?" 

I led them through a series of questions- how do we get money? What does Daddy do? What does our money pay for? (food, clothes, apartment). What would happen if Daddy didn't have money? How would we get those things? Doesn't God ask us to share with those who don't have anything? Do you know he sleeps on the street every night when you're in your bed? Don't you think we have all the money we need to buy things? Shouldn't we share? 

They both agreed we should give money to people who don't have it. 

There are bigger theories and problems and things to talk about as they grow up. But since I have them in this sweet young stage I want them to learn kindness. If I can teach them to be generous and thoughtful now- I can only hope they'll learn to be generous as they grow. 

For now, we will continue to give away toys regularly (they do this so well!), share our clothes, give money when we have it in our pockets, hand out halloween candy, and give of our time. 

Most days I have no idea what I am doing in this parenting gig- but today I remember something I had read- and at the right time I was able to teach them....

look for ways this week to teach your kids about generosity- you'll really enjoy hearing their little hearts of love. :)

(photo of bird feeding off water was taken in Spain/2007 and photo of child taking cheerio from mom was taken The Village/2007).

the invitation

Dear friends and loved ones,

One of the struggles I have with injustices is that I don't know how to do anything to help change them. Living in Detroit has forced me to see the many injustices in this country that I may not have otherwise seen. While David is able to tangibly try to help his patients as a doctor- listening, advocating, finding places for people to go, and offering medical services, etc...  I often feel useless.
I want to help, but I just don't know how in a lot of ways. This feeling is exacerbated by the fact that I am a mom to 3 little children and I don't have a lot of time beyond what I am trying to do for them- especially the numerous therapies and appointments and focus that Bentley requires. So if you're feeling similar to this- you aren't alone.

A friend of ours who is an infectious disease physician recently wrote this on her Facebook, "I am now seeing my third mentally ill, homeless patient with frostbite getting an amputation this week. It makes me so sad how mentally ill are treated in our society- left out in the cold. I don't know what the solution is, but this is really just not right". Her bringing light to this issue is the beginning of caring about it enough to advocate for it. I read this and it reminded me that this is happening a lot. And like her, I don't know how to change it- other than donating to the local shelters and offering warm clothes... but if someone told me something else I could do- I'd consider that as well! 

I want to invite you into the struggles that we face with Bentley. I know you're busy- so remember- this is an invitation- not a demand or an expectation. :)

In order to invite you into the world of having Bentley I must give you some tools to help you along the way. :)

First, get educated on Down syndrome. This website is a good start. Don't read anything that hasn't been published in the last 5 years- research is only getting better!

Second, get educated on inclusion. Find out what I am talking about when I say inclusion. You can watch these short videos. Also, this website is a great way to learn about inclusion: two. They offer conferences and seminars, etc...

Third, learn some things about advocating here: one.

Fourth, participate in your local Buddy Walk! We love the Buddy Walk in Ann Arbor- they raise enough money to offer extra special services like Bentley's horse therapy! We also went to the one in West Linn, Oregon and had a WONDERFUL time!!! So go- wear a shirt- and makes some friends!
Heck, I'll make you a Bentley button if you go!

Fifth, let's have a conversation! I recently read this quote in a book and it was so helpful because I know that people have a hard time talking to me about Bentley because they're afraid they're gonna say something wrong. Let me just say this- if you are for Bentley and you use a word I don't like- I'll tell you. So don't worry about screwing up- I am just thankful you're engaging!

Finally and probably the greatest thing you can do to PARTICIPATE. Ask the school you're looking at for your children where they have children with special needs. Are they in the classroom all day? some of the day ? not accepted? If you as a parent who doesn't have a child with a disability engages a school in this area- imagine what we can accomplish together! There are way more of you than me! Consider the school that doesn't accept children with disabilities. I am not saying I am gonna judge you for choosing this school- we all get to make our choices. I am just asking you to consider it. I think diversity in education is essential. I want my kids to be part of a multi ethnic, economically diverse school that includes kids with disabilities in the classroom. And I don't think all of this would've been a priority before I moved to Detroit or before I had Bentley- so I am just inviting you in on the journey. You could also write out a pro and con list for schools you're considering and keep inclusion on the PRO list and special education as separate on the CON.

I'll close with this sweet edited email from a friend and her family's experience in inclusion from a different perspective: 

Oh I love the words in that book and how she described it, because I often feel that way too (as in, I don't want to say the wrong thing, or how should I phrase this, etc). I just want you to know that I know that we don't get to see each other a lot, but you need to know that you are lifted up in prayer, and that you and Bentley have forever changed our hearts in our home. At parent-teacher conferences, after we got to hear how brilliant and wonderful our daughter is (not saying that to brag, just repeating what the teacher said), the teacher asked us if we had any questions or concerns, and my husband said..."We are just so thankful that students like Chase and Joe (who have cognitive and physical disabilities) are in class with A. They have taught her so much this year." And Adrienne, this is so so so true. We started the year worrying about..."how in the world is this little brain going to be stretched academically, as she really is just extremely ahead of her peers," to now, dinner conversations revolve around "what signs did you learn so that you could speak with Chase today? How did you help Joe when he was having a hard time? Did you and Chase play on the slide together or the swing?" Book learning is so easy to teach. Friendship, compassion, faithfulness, bravery, standing up for the kid who's different...not so easy to teach, and because of her daily interaction with these little boys, she is getting the opportunity to learn these daily. Lastly, I was talking to somebody in the beginning of the year about A's friendship with Chase, as honestly, friendship with a handicapped boy is new for me! This person looked at me and goes "aren't you afraid that by being friends with him she won't have any friends and she'll be labeled the weird kid?" I just looked at said person and replied: "Our prayer is that A will always stand out as different (think Phillipians 4 where Paul talks about shining like stars in the universe)." To this day I am still stunned that somebody would think this way, let alone ask this question. But then I stop and think..."Wow, before Adrienne and Bentley, would that have been me? Would I have thought that way?" I do not know, but it could have been, and thankfully now, it most certainly is not. So thank you Adrienne and thank you Bentley. You have both made me more Christlike.

So thankful for this lovely perspective from such a great friend! She is learning the value of education goes far beyond academics!

Share your stories with me, I love them!


Much love,

A

the process of discovery

Since we made the decision to move to Tucson in October I have made lists about what I am allowed to think about and when- this way I don't get overwhelmed trying to do it all at once. Although I am far from perfect this works pretty well for me. Last month's goal was to enroll the boys in a small elementary school that would provide the services Bentley needs and follow the model of inclusion aka mainstreaming, as well as, be a good fit for Clayton and Lily. The inclusion model is a federally funded law that calls for children to be in the least restrictive environment. I am not some hippie mom trying to cause ripples in the water- the water has already been rippled by the generation before me- it's just that this cause is slow moving. Education in this country is not a thriving system. There are constant political debates about it- lots of discussions about money- so if you enter a child that has a disability there can be some reluctance to changing the policies of education. Research shows that mainstreaming children with disabilities is best for all kids- kids without disabilities learn to communicate, develop empathy, learn to be helpful and compassionate and all sorts of other great things. Kids with disabilities are with their typically developing peers who help them learn life skills, educational skills, and learn to have social interactions. It's a win win. There are some school districts and charters in this country that are doing this very very well. I happen to have Bentley enrolled at one of the charter schools- The Grace and Lee Boggs School.

When I was 22 and about to graduate college and get married I didn't have a job. I had a degree in International Studies and Spanish which provides no future in any specific field. At the time Arizona had emergency certificates for people with degrees who would teach and go to school to receive their teaching certificates. I printed off a long list of Tucson charter schools and began calling them all the way down the list to find a job. No one wanted to hire me. I kept that list and I'd call back from time to time until I eventually got a job teaching. Thankfully in the meant time I worked at a medical office as a scheduler for 6 physicians.

When Bentley was born the early on people came out to our condo in Ann Arbor and made a plan with me for Bentley and I followed their plan until he was 3. In Detroit I was so frustrated with the public school system's approach to special education I pulled him. Eventually I called every preschool in my area and found one that would accept Bentley. This ended up being a wonderful preschool that Clayton attends now. He didn't have a special ed teacher or speech or ot, but he was with his peers, and it was good.

I've written a lot about the finding of the Boggs School. What a blessing that has been.

I met with a new friend and mentor for lunch yesterday and we had the most amazing conversation. I am so thankful for someone that fought so hard for her son  and has well rippled the waters to provide opportunities not only for Micah, but for many children who would otherwise be separate. She is amazing.After my meeting with her- I went to Bentley's annual IEP meeting and walked in late to a room of 7 people all there to discuss my son. It took my breath away. At the Boggs School I am not afraid of IEP meetings because I know that they're on Bentley's side. They want to provide him with a rich inclusive education- sometimes even more inclusive than I'd require!

I find myself feeling like that hopeless 22 year old looking for a job. I knew I wasn't qualified, but I knew if I was given a chance I could learn to become a good teacher. I know that Bentley is not what you think is an ideal candidate for your school- but if you give him a chance to thrive in your school I think he'll become a great student!

I have called every charter, several affordable private, and a gander of public schools in Tucson who are all currently enrolling for the next school year- and guess how many want Clayton and how many want Bentley? "Well, I am not sure about your son with Down syndrome- you'll have to talk to the school psychologist/special ed teacher/principal/ and see. But we would love to have your kindergartner." No joke. I love my son Clayton- but I'll be damned to send him to a school without his brother. I do change my mind about these things- but in this moment- right now- I want them together.

Enrollment season is a season of excitement and anticipation and wonder- it's a time to dream about your child's teacher and friends and activities. But for a mom with a special need's child it is a reminder of how unwanted my child is. My famous quote in the Bentley video and radio interview was, "we wanted a school that wanted him." And I still believe this. I don't want to convince you that you want Bentley in your school. He will bless you- not curse you.

And so I say this- whether you are carrying a child with Down syndrome and you are new at this- or you're an educator- or a pastor- or run a camp or facilitate a play group- take in my child. If you're reluctant- that's ok- it'll pass. But don't be afraid of the unknown. Welcome in what the world has named the least of these- and allow this burden to prove his or her blessing upon you. I am so glad I did.