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