Mommy Inclusion

As we approach the end of the school year and make decisions about next year and the future, I've become increasingly aware that inclusion is not just an issue for William. Our preschool is small and has a strong sense of community. We go there everyday. The moms there know my life, they share my world. They are easy for me to relate to, and they relate to my kids easily.

A lot of people talk about the Christian bubble. I realized last week that I can be tempted to retreat into the special needs bubble. In fact, I often feel more comfortable with non Christian moms of special needs kids than I do with Christian moms of typical kids. I know that's understandable at a certain level, but it's something I definitely want to work on. A few initial ideas on how I can grow:

-Make Jesus and not life circumstances or season of life issues the primary topic of conversation with other Christian moms.

-Make Jesus a significant topic of conversation with non Christian special needs moms. After all, a lot of these ladies couldn't attend most churches (ours included) if they wanted to.

-Accept the fact that relating to people who are different than me (and helping our kids relate together) can be hard work, but it's worth it. Pray for God's help before planned interactions.

-Grow in knowing when and how to graciously explain differences to those we have ongoing relationships with. (Suggestions, anyone??)

Feel free to share other ideas or ask me how this is going.

Easter Ham

William's saying more rote phrases these days. Two new ones that crack me up are, "My goodness!" and "Are you serious?"

Baby Beauty

You can see Abby's dress better in this picture.

Easter Lily

It's fun for me to compare pictures and see how much my Easter Lily has grown since last year.

Easter

Easter was a bit of a neglected holiday again this year. I'm hoping next year I'll be able to devote more time to both Lent and Easter. But, thanks to Auntie Jenn Outfitters, the kids had adorable matching outfits for church on Sunday. And after church we enjoyed dinner and an Easter Egg hunt at Grandma and Grandpa B's.

Angel Baby

Abby only woke up once the last couple nights. It's not a pattern yet, but it's awful encouraging- and helpful for this tired mommy.

Bump

As Stephanie Hubach (author of Same Lake, Different Boat) says, we all bump up against the effects of the Fall in our lives through sin, sickness, natural disaster, etc. The family with disability just experiences those bumps more often and/or with greater intensity than usual. I was reminded of that this week. William is making such great progress; his schooling for next year is coming together, and yet we definitely felt some bumps:

-I go to observe the school district program and observe that the lowest functioning child in that class is far beyond William- following complex directions, reading sight words, typing. We're not even planning on sending William there, but it was still an emotional conversation for me to discuss the challenges of that setting for William with the principal. "There isn't any other class?" "No, but he wouldn't stick out." I'm not worried about him sticking out; I just thought that in the special ed class, he'd be on par with some of his peers. Bump.

-A wind storm wakes up lily one night. We have a sweet conversation about how Jesus is watching over her ("And Jesus is watching over Bubbie, and Jesus is watching over you, and Jesus is watching over Daddy, and Jesus is watching over Bingley, and Jesus is watching over Baby Abigail!") A couple hours later, William wakes up crying. We don't know if it's from a bad dream or the storm. The only thing we can do to calm him is hold him- the words and their truths aren't comforting. When he goes back to bed, he pulls the blanket over his head. Bump.

-William gets ready to go outside one afternoon. As he heads out the door, I notice that his boots are on the wrong feet and he's walking funny. "Boots ouchie?" I ask. He looks at me hard. He knows both those words, but he's never heard them together before. "Boots ouchie?" he repeats questioningly. "You ok?" I ask. "You ok?" he says back confused. He looks like he thinks he's in trouble. I decide to drop it. "See ya later!" I say with a wave. "See ya later!" he replies and turns to play- still walking funny. Bump.

-William's tutor is all excited that he can hand her common objects from a set of five. I should be excited, but- maybe because I'm tired, maybe because of my observation at the school district class- instead I feel the gap between us and typical development. Bump.

-Lily decides to share her candy from her Easter egg hunt at school with William on the way home in the van. "Say more, Bubbie," she instructs him. "Say more," he replies. Bump.

The miracle of the resurrection brings special comfort in times like that. And I'm reminded of William's greatest need- to have a new heart as well as a new body.

Dying Easter Eggs

Speaking of the Alphabet...

Lily isn't the only one who's into letters these days. Thanks to the Winnie the Pooh ABC's DVD, William can now write T, E, R, P, and O in addition to W.

The Traditional Version

Lily wanted you all to hear her sing the traditional alphabet song too:

The Alphabet Song

I bought Hooked on Phonics for William for next year, and both kids have already shown a lot of interest in it. Not that we know all our letters yet or anything, but it's fun to watch their excitement. Here's Lily showing off her knowledge of their alphabet song:

A Motivating Mantra

Graduating Peter

I've mentioned the documentary Autism is a World on this blog before. Gerardine Wurzburg, the director of that film, has a new documentary out called Wretches and Jabberers (HT: Daddy). I haven't had a chance to see it yet, but I did watch his earlier Acadamy Award winning film Educating Peter recently. I found the sequel, Graduating Peter, especially helpful. The two documentaries follow a boy (who becomes a young man) with Down Syndrome who is fully included in the typical classroom.

Other than his fairly extreme behavior and physical disabilities, Peter resembles William in a lot of ways: mildly mentally retarded, severe language disorder, socially and emotionally engaged. The film clarified a number of thoughts in my head about inclusion and William's future. Of course, William is only five. So if any parents of special needs kids are reading this, feel free to comment with helpful or corrective info.

-Inclusion is a mixed bag. Don't get me wrong, I think it's great for special needs kids to be around typical kids and vice versa, but I'm not sure the classroom is the best setting for that. Especially as Peter gets older, the amount of time in the classroom for socialization is pretty slim. And the majority of the time is spent doing things that are specifically the most segregating for him- academics. Even a mentally retarded kid can tell that they are not doing what everyone else is doing.

And I can say from my own experience working with included kids, that they often learn to tune out the teacher and "do their own thing," which tends to backfire on them as they move into employment situations in the real world.

-Inclusion doesn't automatically mean friendship with typical peers. In Graduating Peter, the teachers make the observation at one point that Peter is physically surrounded by people but is socially alone. The special ed teacher then creates a social inclusion group for Peter and other special needs teens with typical peers from their school class. Peter also becomes the manager of the soccer team. All the sudden, these teens who grew up beside Peter start actually hanging out with him, and it makes a huge difference.

Kids don't naturally learn to initiate with special needs kids. They have to be taught, and it often helps them if they come to a situation with that purpose clearly in their mind.

Of course, it also helps that the teens in the movie are seniors by that point. Which is another reason the classroom is not always the best place for inclusive friendships- special needs kids are often more academically similar to younger children (Peter is held back a couple years in school). But typical kids seem to relate better when they are older (teens), or at least when they are a little older than the special needs kids.

-Relationships do matter. Both documentaries do a great job of showing the spiral effect of how good relationships produce positive emotions which encourages good behavior, which in turn improves relationships even more and the equivalent negative effect of isolation breeding depression which fosters inappropriate behavior which in turn increases isolation all the more.

Special needs kids still have emotions, and they still desire friendships. If William is not in an inclusive setting for school (and even if he is), we are going to have to be intentional about helping him develop long term supportive relationships outside the family whether through extra-curriculars, hobbies, church, the local neighborhood, or organized relationship programs.

-Peter's greatest disability is his behavior. Whether it's because of the disability or because of the lack of discipline at home and/or in the classroom is hard to say. But it's clear that Peter's greatest limitation socially and occupationally are his behaviors- not following directions, taking things from people to get attention, not staying on task, etc.

As a mom, this was a fresh, clear reminder that parenting is the biggest thing I can do for William- training him to relate to people lovingly and respectfully, to do chores thoroughly, to obey quickly and cheerfully. These are things we can start working on today that will have a huge impact on his future.

-It's helpful to keep the purpose of education in view. When I was calling around to schools looking for a place for William, one lady asked me what my long term future goals were for him. I said something like, "I wish I knew." And I thought, 'Honestly, what parent has long term future goals for their five year old?' But it really is a helpful question. The other kids are in the classroom to learn skills for them to live and work independently. That probably isn't realistic for us, even just for safety's sake.

However, I think we can learn to live independently in a safe environment. What makes Peter feel like a burden to his family at times is not the fact that he's still living at home as an adult. It's the fact that he can't tie his shoes by himself, that his mom has to get him up in the morning even when he sets his alarm, that he has to be reminded to stop and look both ways before crossing the street.

If William can get up, get his own shower, get dressed, eat breakfast, and pack his lunch, I don't think it's that big of a deal if he needs a ride to work. This is helpful to remember when making educational goals.

For example, we don't need to know algebra, but telling time is crucial. We don't actually need to read a recipe (like Peter practices in his daily living skills class). Eric didn't cook as a bachelor, so why should we expect William to? But he does need to be able to be responsible for himself, to be self-disciplined, to write his name and read street signs, etc. Language skills are especially valuable.

So maybe being in an inclusive class with younger kids may be helpful at some point. And home school is feeling more and more appropriate. Educational success is not walking across a stage to get a diploma; it's living to one's potential in the real world.

-Which brings me to vocational goals. You see with Peter that it's not his poor academics that makes it hard for him to find a job. Character, cheerfulness, and responsibility go a long way.

That being said, not all minimum wage jobs are equal. After trying out a number of jobs, Peter is successful as a helper in a hotel kitchen.

This job seems ideal to me because:
1) It's in a limited space where the supervisor is always in view.
2) It's with a limited number of people (3-4) who get to know Peter well.
3) It involves many short tasks with little sitting, which fits Peter's attention level.

I know such an ideal job might not be available for William, but those are helpful categories to remember: a safe environment, at least one person who's looking out for him, work that matches his abilities.

Like I said at the beginning, these are all just initial thoughts. We haven't even done kindergarten yet. But it's helpful for me to formulate my thoughts. And I'm so grateful for today's technology that makes information like those documentaries available at my fingertips. I'm excited to see what I learn from watching Wretches and Jabberers.

Wall Art

I'm no interior decorator, so I was happy with the way this wall quote turned out. It looks so new and fresh, it makes me almost want to clean and re-organize my kitchen. Almost...

John Murray

I recently finished reading The Life of John Murray which my brother Jonny so kindly gave me for my birthday. Murray was Orthodox Presbyterian. In fact, this book makes it sound like he wrote the OP position on a number of subjects. So there are things I definitely disagree with him about. But I found his story fascinating, inspiring, and encouraging. Here are a few tidbits:

-Murray was born in rural Scotland and was largely the product of the Scottish Reformed circles he grew up in. (That's a history I want to study more.)

-Murray's denomination usually simply mentored men who wanted to be pastors, but they sent Murray to study at Princeton (the main Reformed seminary at the time) with the idea that he would provide theological direction for the denomination upon his return to Scotland.

-Murray attended Princeton in the 1920s when it was a battleground between historic Christianity and a more modern, liberal "faith." Murray helped lead the student movement for staying biblical. (Interestingly enough, both the faculty and the Board as well as the students wanted to stay conservative. It was the denomination that forced the change.)

-Murray was denied the pulpit in his Scottish denomination because of his view on the Sabbath. Murray had an extremely conservative view of Sabbath-keeping. But his denomination wanted him to deny communion to anyone who took public transportation to church on Sunday, and he refused to do that. So his lifelong desire to be a pastor was denied. He became a seminary professor instead.

-Murray was part of the group of professors that left Princeton in order to start Westminster in 1930.

-Murray had a huge respect for the Word of God. He taught systematic theology, but he introduced every new subject by reviewing all the texts on the subject in the original language. He had a large portion of Romans memorized in the Greek.

-Murray wrote a two volume commentary on Romans that I want to read. A few highlights mentioned in the book:

"Just as there is to be no social aristocracy in the church, so there is to be no intellectual autocrat."

"Pride consists in coveting or exercising a prerogative that does not belong to us." (especially helpful to me because I always wondered, if humility was being aware of our sin, how was Jesus the most humble person ever.)

"The love of God is supreme and incomparable. We are never asked to love God as we love ourselves or our neighbor as we love God."

-Murray believed that a major missing aspect at Westminster compared to Princeton (historically) was the lack of opportunity to experience the faith together- to hear the professors preach not just teach, to pray together, to share biblical fellowship together, etc. He thought the Seminary should not only teach true religion, but also provide examples of zealous piety- "theology coming through men who are on fire."

-It appears that, other than articles for the Reformed journal that he helped run, Murray never pursued the publication of any of his writings. In fact, he is known to have denied the publication of some of his writings because he was concerned they wouldn't be helpful.

-Murray was largely unknown in Britain until Dr. Martin Loyd-Jones re-introduced him. Then, 40 years after first leaving to study in America, he became a theological leader to the young Reformed resurgence in Britain, not unlike his denomination originally intended, but with far greater scope.

-Murray retired while still very able-bodied in order to run the family farm and care for his senile older sister. It was at that point that he finally got to do what he always wanted to do- pastor a small (20 or so member) country church.

Meeting Covenant Community

This past week, I listened to a talk given by Iain Murray at Capital Hill Baptist Church on George Whitefield and catholicity, or evangelical unity. Murray gave examples of how Whitefield saw Christians not primarily as members of certain denominations or churches, but first and foremost as members of the body of Christ.

Tonight we experienced a very real demonstration of that. A group from our church met with another nearby church for dinner, fellowship, worship, and teaching. It's wild how you can have an instant connection with people you've never met before simply because you're both believers.

But what made this meeting especially significant was the fact that, on Easter Sunday, this church will meet by itself for the last time, and the following Sunday they will come worship with us. We are going to spend the summer getting to know each other and helping them learn who we are as a church and what we are about. And then next fall they will decide, individually and as families, whether to join our church permanently or not.

What I was aware of as we shook hands and took turns introducing ourselves tonight, was that these people are our brothers and sisters in Christ. Some of them may link arms with us in a more personal way. But no matter what they each decide, it's a pleasure to get to know them. They love Jesus and they are seeking to serve Him with their lives. I was surprised at what an encouragement that was to my faith.

Bingley and the Baby

Bingley is doing a little better with the baby. Like a youngest child, he appears to be both jealous and curious. I am trying to be patient but firm with him. I guess I really have four children...

One Month Old

Abigail turned one month old on Tuesday. She still sleeps most the time. She has a lovely rose complexion and a generally contented spirit. She's got a great smile, too, but I haven't caught it on camera yet.

What a gift from God!

April Showers Bring...

...Muddy Children

Carrousel

Lily's been waiting since November to visit the "big merry-go-round" near Grandma and Grandpa R's house. We took advantage of the easier schedule over spring break to finally make a trip. The motion was a bit much for William, but Lily totally loved it. And we had the extra treat of being joined by Tio 'Teo, Auntie Mim, and Lydia as well as Grandpa R.

Abigail's Favorite Place

Good News for April Fools

"And a highway shall be there, and it shall be called the Way of Holiness; the unclean shall not pass over it. It shall belong to those who walk on the way; even if they are fools, they shall not go astray." Isa. 35:8

I'm not sure if Spurgeon purposefully picked this Scripture for today's date in the Chequebook of Faith, but I thought it was pretty appropriate.