Josh the Bridge

Two homeless people that I recognized from church were drinking coffee and smoking outside of the coffee shop that I had just walked out of.  My van was parked right in front of them so I stopped and said, "hello".  One of them recognized me and introduced me to his friend.  I thought that it was very interesting that, despite the fact that I am married to the lead pastor, he referred to me as "the mom of that boy... you've probably seen him around church".

His friend immediately knew who he was talking about.  "Oh yeah.  I've seen him.  He . . . uh, whaddaya call it?  He walks in circles, right?"

"He has autism."  I offered, trying to be helpful.

"Right, right.  Autism."

They were both very pleased to have the right word and did not seem at all uncomfortable about talking about my son.  They asked how he was doing and offered the observation that he seemed to be more calm on Sunday mornings.  We had a lengthy, pleasant conversation about special needs, and kids and our community.  To them, knowing that I was Joshua's mom seemed to make them more at ease with me, like we had an unspoken understanding of what it is to have hardship in your life.  It was a surprisingly warm and connective conversation given how little we knew each other and how dissimilar our lives are in many ways.

I've noticed that Josh has this effect on many others who live a different sort of life than most people.  A young teen in our church, who is a foster child, seems to have a natural affinity for Josh and offers to help out with him on Sunday mornings whenever he can.  Another woman, who has mental health issues, has approached me and has told me that she feels like she relates to Josh in having a different kind of brain.  She tells me that she sees the love of God in Josh as she watches him interact around the bagel and doughnut table.

For me, Josh is like a bridge to many different types of people, especially people who are marginalized.  It's almost as if I have some sort of instant credibility or trust that I, too, live an alternative and difficult life even though I'm a minivan driving suburban mom. This brings a richness and a diversity of people to my life that I treasure.

Enrichment and the Josh Factor

The other day, I was trying to schedule a playdate for my 7 year old daughter with a friend from her class at school.  The conversation went like this:

"How about Monday?"

"Oh, Monday is Jenny's voice class rehearsal.  She can't miss because she has a performance this weekend."

"And Tuesday?"

"Hmmm.  Tuesday is Girl Scouts then skating . . . and I know that we both have Mandarin after school on Wednesday."

"How about if I drop her off after piano on Thursday?"

"Sorry, Hope's brother has autism therapy on Thursday."

"Darn, we have something on Friday afternoon this week.  How about next week?"

 I live in a community where many of the children are engaged in dizzying array of "enriching activities".  The city in which I live is fairly affluent and filled with highly talented and educated people.  We also attend a school where the majority of the parents are really involved in the school.  The result of such realities is that parents are highly invested in the enrichment of their kids.  It is not uncommon for children to have at least one enriching activity every day of the week.

Foreign languages, sports, social clubs, music lessons.  These things often begin in kindergarten and only get more intense as kids grow older.  By the later elementary or middle school years, many kids choose into a more high level, competitive version of their activity such as travel teams for sports or city orchestras.  In order to get there by, say, age 10, the child has to begin those activities (with some amount of commitment and focus) by early elementary school.  The other day, Hope said to me that she wanted to become like Gaby Douglass, her hero.  I had the cynical (though unspoken) thought, "It's too late for you, kid.  You're already in first grade and you don't even take gynmastics lessons."

I'm definitely not immune to the temptation and the allure of lots of enriching activities for my kids.  Who doesn't want their child to be multi-talented and super skilled?  Besides, music, sports, languages . . . these are good for brain development and emotional health, right?

Yes, but the result can be a culture of very entitled and exhausted kids.  

The other day, I heard one kid from my daughter's class say with a sad frown on his face, "I don't want to do basketball and baseball.  I'm doing too many sports."  We've all heard about kids who have acquired a lot of skills but haven't had the time to just lay around, be bored, and be forced to be creative.  

But here's the thing that I've realized.  My girls have a secret weapon to battle the culture of over-scheduledness and over-enrichment: their brother.

The reality is that Joshua simply cannot handle a complicated schedule.  I have tried dragging Josh along to take the girls to mid-week swimming or gymnastics lessons.  Honestly, it's a gamble.  There are days where he is relatively compliant (especially if I bring along plenty of snacks).  However, there days when he will get completely upset and throw a huge tantrum in lobby of the YMCA.  Or there was also the day at the library when we were taking too long so Josh went up to a random middle aged lady and slapped her on her bottom.  (She was pissed and didn't speak enough English to understand my frantic explanation.)

Josh also has more than his share of doctors appointments, which the girls often have to come along for.  Finally, Josh has autism therapy at home several afternoons a week which means that we can't leave the house.

So, the reality is that my girls do far fewer scheduled activities than most of their peers.  They do not play piano.  We have never gone ice skating.  We choose one sport a year.  There have been many days where I feel very guilty about this.  However, today, I am realizing that this is a blessing.  The highlight of our afternoon today was sitting around and eating popsicles in our driveway.  We greeted people who walked by and enjoyed watching Josh walk in circles.  We read books and checked to see how our pumpkin seedlings are growing. Hope and Anna are very good at making up stories while playing with mud in the backyard.  They also play games like "squashing up ladybugs to make jam" (a pretend game).  It's not super duper "enriching" but I'm trusting that this is the reality of the life that God has given to us and it's good.

The Magic of Joshua's Classroom

My son's classroom is a magical, beautiful, loud, chaotic, overwhelming and profound place.  8 adults (an amazing teacher and 7 assistants) spend the day together trying to educate 9 children   who have varying disabilities. Most of these children are non-verbal and several are non-ambulatory.  Most of them wear diapers. Two of them have many seizures throughout the day. Each of them have an IEP (individualized education plan) so the cirriculum seems to be as diverse and complex as each of these kids.  A myriad of specialists, such as an occupational therapist, a speech therapist, an adaptive physical education teacher, a vision therapist, an orientation and mobility specialist and a music therapist, come in and out of the class (or pull kids out to work in other rooms) at various points in the day.

Conducting this crazy symphony is Suzanne, the teacher. Suzanne is one of the most hard working, dedicated teachers I have ever encountered.  I get emails from her at 5:45am and I know that she's already at work.  Not only does she know what's going on for each child, she also manages and trains each of the aides in the class.  Everyone agrees that she does a fabulous job.  Personally, I think that special education teachers deserve an all-expense paid trip to Hawaii every summer.  I wish that our society valued these hard working maestros appropriately.

The most amazing thing to me is that, in the midst of such high challenges, these kids are, indeed, learning. Life skills are being acquired.  A caring community has formed.  Milestones are celebrated together.  A routine has been developed and embraced.  Josh has come such a long way this year in terms of acquiring many skills for learning and independence.  Every morning, he comes in, puts his jacket and backpack away in his cubby, puts his lunchbox on a cart, and checks his daily schedule so he can get to work.  A well-run special education class room is a thing of mysterious beauty.

A few weeks ago, one of the aides, Junior, became a US citizen so the class threw him a party.  All of the kids dressed in red, white and blue.  I don't think that the kids quite understood what was going on but they were excited and happy.  I think that the kids pick up on the sense of belonging and unity that pervades this class.

Soon, I will attend a meeting to plan Joshua's transition to middle school next year (!)  As I reflect on the education that Josh has received this year, I find myself filled with gratefulness.

I Don't Know How She Does It

I'm a busy girl.  This is a photo of one month on my dayplanner.  Scary, isn't it?  My husband calls it "scheduling in tongues" because it looks completely incomprehensible without supernatural interpretation.  We do use online scheduling tools and calendars as well but I still can't part with my trusty paper dayplanner to be the central management center for all of my miscellaneous appointments, to dos, and events.  And there are many.  Many.  Many.

For instance, in the month of March, Josh had 5 doctors appointments, 8 autism therapy appointments, 5 adaptive swim lessons, 2 med adjustments, 3 blood draws, 3 special consultations and 24 hours of respite care divided up into 5 sessions.  Many of these appointments were scheduled then rescheduled several times.  This doesn't include appointments and activities for my two other children.  But I did it because it had to be done.

Recently, several people who know how complicated my life is, especially because of Josh, have commented "I don't know how you do it!"

This reminded me of an excellent novel I read a few years ago about the complexity of motherhood by Allison Pearson called I Don't Know How She Does It.  It made me laugh and cry. I really related to the central character who lives an incredibly busy life juggling marriage, kids and job (getting very little sleep) and squeezing a million demanding things into 24 hours (and she doesn't even have a child with special needs!)

I've been thinking about the question, "How do I do it?"  How do I manage all of the really complicated demands, details and dramas of my life?  There are probably many answers to that question but, today, one thing comes to mind.  A crucial part of how I can handle my crazy, "mom of a multi-disabled child" life is that I have to have a a few places in my life where I allow myself to be totally weak and needy.

For example, every once in a while, I make my husband listen to me vent about how frustrated I am with dealing with dysfunctional organizations and systems that are involved in getting proper services for my son.  This conversation usually involves me expressing anger, critical thoughts and despair.  I cry.  My husband listens empathetically without trying to problem solve.  This usually helps me a lot.

I experienced another example of being weak this past Sunday at church.  At our church, we have something called, "prayer ministry".  This means that at the end of every service the pastor invites anyone who has a need for prayer to come up and stand at the front of the church.  You stand there facing the front, with your eyes closed and with your hands held out open in front of you and you wait for a person who is trained in prayer ministry to stand with you.  When the pastor closes the service, you sit down with that person who will listen to you for a few minutes then pray for you.

This week had been particularly difficult so I just knew in my heart that I really needed to get prayer.  I even arranged ahead of time for someone else to go pick up my kids from their Sunday school class so I could have a few good minutes to get prayed for.  I was ready.  But, wouldn't you know it?  This time, when the pastor invited people who wanted to get prayer to come forward, no one went up.  The whole congregation sat in the "one and half minutes that feels like an hour" time of waiting to see what would happen.  No one likes to be the first or only person who goes up front to get prayer-- all eyes being on you.  It feels like you might as well wear a sign on your back that says, "I'm the neediest person in this whole room!"  Plus, I happen to be the wife of the pastor of our church who happened to be leading this prayer ministry time so there's the extra feeling of a spotlight on me.

But you know what?  I just might have been the neediest person in the whole room.  I don't know what's going on in anyone else's life but I do know that there are burdens in my life that I just can't carry alone.  I decided to embrace the reality of my weakness.   I walked up to the front of the room and stood there declaring my need to God, to myself, and to anyone who might have been watching.  Thankfully, many other people followed.  Even more thankfully, I felt that God met me in a deeply comforting way as another woman from our church prayed for me.

I have realized that I have to spend a lot of my day being competent, organized, and strong.  Sometimes I can be in that mode for days on end.  Sometimes I can fool myself into thinking that I have to be like that all the time for the sake of my kids.  However, I am finding that the best way to be a strong person is to find the right, safe places to be a weak person.

When do you allow yourself to be weak?  Do you have places where you can take a risk to declare your need to yourself, to others and to God?

Slowing Down and Doing More

"Want dried mango."

Josh and I were careening down a crowded aisle at Costco today when he spied one of his favorite treats and quickly asked for it.  Although Josh is legally blind (20/200) due to an underdeveloped optic nerve, he often surprises me with how well he can use his vision when he really wants to.  I was reminded of how every trip to the store can be a learning experience if I let it be.  My girls were on a bike ride with their dad so we had plenty of time.

"Ok, Josh" I told him.  "You get one and put it in the cart."

He did so with ease.

Usually, I speed through these visits to the store hoping to simply keep him happy and avoid a meltdown.  It usually involves hitting up all of the free sample tables and keeping Josh occupied with a steady flow of snacks.

 But last week, I had gone along with Josh, his aide and his orientation and mobility specialist (a therapist for visually impaired kids) as they went on a field trip to the local drugstore to teach him how to search for items, to manage a basket and to pay for those items with money from a wallet that they had put in his pocket. It was amazing to see how much he could do given patience, intentionality and plenty of time.  He still has lots of skills yet to master but this was a great start.  I was convicted that I need to let Josh do things on his own more if he is going to begin learning those life skills that will help him to grow up and learn to interact with the world more appropriately.

So today, for the rest of the time at Costco, I made Josh find all of the items on our list and put them in our cart himself.  Then he helped me put the items onto the check out counter.  When we got home, I asked him to help me carry everything into the house or into the garage.  It took forever, and he dropped many items several times but we finally did it.

He was definitely more resistant to me, as his mom, than he was to his educators.  I suppose this is because, as a busy mom, I usually do way too much for my kids rather than to take the time to make them do age appropriate things on their own.  I realized that this is true for my girls as well when my 7 year old feigned helplessness the other morning when putting on her tights (which she totally was able to figure out by herself).  Why is it so attractive to make one's Mommy do things for you?  And why, is it so tempting for a parent to do things for your kids that they should be doing on their own?

For me one of the greatest barriers to fostering independence for my typical kids as well as my child with special needs is my desire to get things done quickly.  On one level, it IS faster to do things for your kid.  Tying their shoes for them, putting their dishes away for them, prepping their backpacks, it's so easy to just do them for my kids rather than taking the time to force them to do them for themselves.

But here's the thing.  If I do things for them now, I just may have to do it for them forever.  I have a feeling that they will never magically hit that moment where they just decide to take responsibility for themselves and for their stuff.  SO, I have to remind myself that it is worth it to give each of my kids chances, whenever I can, to learn to do the things that I COULD do for them but that they must learn to do as well.  In order to do that, I need to SLOW DOWN so we can not only get the thing done in the moment but to teach my kids to do them for a lifetime.  

Responsibility and the Sibling Experience

"When am I going to get to ride my bike to school by myself?"

"I wish I were a grown up.  Then I can drive you around instead of you driving me around!"

"I can make parmesan toast all by myself!"

"I'm only going to eat scrambled eggs if I make them from now on."

These days the desire for independence and responsibility is sprouting up like spring flowers around our household.  As a parent, I am wanting to harness all of this "I want to do this all by myself" energy into true, appropriate skill development.  It's a great blessing to our whole household to be able to trust my 6 year old to floss her own teeth or for my 7 year old to help me with folding the laundry.  They are actually starting to help things move forward faster and get done!  It's pretty great.

But what do you do when they are taking too much responsibility?

The other day, out of the blue, Anna said to me, "I don't think I can be an actress after all."

"Oh really?  Why Anna?" (I was somewhat surprised because Anna is into all things theatre, performance and "on a stage" these days.)

She replied, "Well, if I'm an actress, I don't think I'll be able to take care of Joshie."

It touched my heart to hear that my 6 year old daughter is already thinking about taking responsibility for her brother.  But, at the same time, I wonder what it must be like for her to grow up carrying the burden of her brothers needs.

Recently, I've been reading What about Me?  Growing up with a Developmentally Disabled Sibling by Bryna Seigel and Stuart Silverstein.  One chapter in this book talks about a dynamic that they call "parentification" which is used to describe siblings who react to a disabled brother or sister by precociously taking on a parental or caregiving role with respect to that sibling.  The authors warn that, while being aware of the needs of others can be a very positive element of a child's development, a great drawback of parentification is the loss of one's own childhood and the freedom to experience the natural "self centeredness" that young children go through.

My husband and I are very eager to protect our daughters from a sense of overresponsibility.  We made the choice to put both of them into kindergarten on the later side so that they could be a little older as they go through their schooling.  We are careful with what we ask them to do in terms of helping us with their brother.  But clearly, we cannot protect them from seeing the reality that they are likely to be relating to Joshua for many more years than we are.

"Oh sweetie, that's very nice of you,"  I told Anna.  "But Josh is going to be living with Mom and Dad so you don't have to worry about him living with you."

"But what about when you die?"  (Ah, kids are so honest, aren't they?)

I looked her in the eyes and said, "Anna, when Mommy and Daddy die, Josh will probably live in some sort of group home situation.  You and Hope can help take care of him but you don't have to have him live with you."

Anna took a few seconds to let that adjusted reality sink in.

"Ok."  She said, happily moving on.  "I guess I WILL be an actress. . .  and a pastor.  Can I do that?"

"Yes, Anna.  You can."

Lemon Tree

I have a love/hate relationship with the lemon tree in my backyard.  Years ago, when we first moved into our house, my sister bought me a miniature lemon tree in a planter at Home Depot as a housewarming gift.  I was very excited because I live in a part of the county where citrus trees grow quite well.  When you go walking around our neighborhood, you will walk past many, many fragrant and beautiful trees full of lemons, limes, and other citrus fruits.

I planted this tree, fertilized it and watered it regularly.  I can see it from my kitchen window so I often looked at it and looked forward to never buying lemons again.

Alas, it refused to produce fruit.  In the past 6 years of having this tree, it has only produced around 5 lemons.  And these lemons were dry and not very juicy!  I read up on the care and feeding of lemon trees.  I bought more fertilizer.  I even talked to the thing.  Still no fruit.

I began to resent this tree.  Why are you taking up my time and energy?  I wanted you to be productive, to save me some money over time.  I even thought I would be able to share of your abundance with my friends and neighbors but no!  This year, it looked like it was going to be another no-fuit year.  I thought about how Jesus cursed the fig tree for not having fruit.  I thought about doing the same.  Or at least getting rid of it and trying again with another type of citrus.

One day, I looked out my window and this is what I saw.  The tree offered me this one ripe lemon like a mocking gift or, perhaps, as a peace offering.

I've been thinking about this lemon and what it might represent.  Like most things of mystery in my life,  it made me think of my son.  He is the other thing that I spend so much energy nurturing, hoping for good fruit.  And in some ways, he is a "fruitful vine".  He produces laughs and smiles and happy moments aplenty.  He adds to our family in and our community in ways that are difficult to quantify.  However, in some ways, he leaves me waiting for the fruit that I hope for and expect.  The normal ways that we expect a child to be productive, in terms of educations, learned skills and capabilities are slow in coming for Josh.  It has taken Josh 6 years of public education to be able to spell his first name.  Like my lemon tree, it takes Josh much, much more time to do what he's supposed to do.

Ultimately, I don't have to accept that from my backyard lemon tree.  At some point, it may be time to decide that this tree needs to produce or else.  However, although it hasn't given me many lemons, it has given me a picture of growth that is slow and surprising. It has been a parable to me, instructing me in the mysterious and uncontrollable ways of growth.  You can't make growth happen.  You can just be a part of it and see what you are given.