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.

Growing Up, Growing Older

I still call him "Baby" even though he's ten years old and almost a hundred pounds. I am guessing that every mother has, inside of her, a sense that each of her children are her babies.  We've known them and cared for them since they were in diapers.  We've known every part of their growing up process.

Like everyone's babies, mine is certainly growing up (or at least he's certainly growing older and getting bigger).  And like most moms, watching my baby grow up is bittersweet.  He doesn't always want me to snuggle with him now and sometimes he prefers to be alone than being with me.  I marvel at how quickly these years have gone by and how he's suddenly a fifth grader!  Next year he'll be in middle school (albiet in a special needs classroom).  His childhood seems to be speeding by at lightning speed.  To watch this happen feels like a sweet pleasure mixed with pride and abject fear of the future.

The difference between my ten year old and other people's ten year olds is that mine still can't talk much or write his name yet.  He has not yet learned basic safety things such as our phone number or address and is basically still a person who needs one to one supervision at all times.

One challenge that I have is what to do in terms of going to the bathroom when we are outside of our home.  Although Josh can do most of the steps of a trip to the bathroom himself, he can't always make his way around a new bathroom.  Also, without prompts, he can get stuck on parts of the process.  For example, he would probably wash his hands for a half and hour if sometime didn't tell him to move on.  I am starting to feel the tension of bringing him into the ladies room with me when we are at doctors visits or out shopping or at church.  People are often confused and even uncomfortable with having a bigger kid in the ladies room.  Some places, such as the YMCA, posts signs saying that boys who are over 7 years old, are not allowed in the women's dressing rooms or restrooms.  Thankfully, most people are quite understanding when they see that Josh is not a typical child (and his noises or flapping usually make it clear to anyone who is paying any attention.)

I experienced this problem with surreal clarity and painfulness on Christmas Eve.  There was no childcare or a buddy program at our church on Christmas Eve as it was a "family service".  Josh declared in the middle of the service that he had to go to the bathroom so I left my girls in the care of a friend and took him .  My husband could not help because he is one of the pastors of our church and he was giving the Christmas Eve homily.  Personally, I think that being in the room with so many people was starting to make Josh anxious and he knows that the bathroom is a place  where he can take a break and be in a more "safe" place.

Now, our church meets in a community center and so there are often people around who are not necessarily there for church functions.  This day, there happened to be a homeless woman who had set up her belongings in a corner of the warm bathroom.  She did not seem to be completely mentally balanced because she immediately took great and loud offense that I had brought a "man" into the bathroom.  "What if I had taken off my clothes?!" she asked, seething with anger.  This struck me as a little funny because this woman had tied about 20 plastic bags to various parts of her clothing.  I figured that it would take her at least a half an hour to take off her "clothes".

I tried to explain that Josh has special needs and he can't go to the bathroom himself.  "Besides," I told her with an attempt at a winsome smile, "He's visually impaired.  He can't really see you all that well, anyhow."  This did not win her over.  She continued with a barrage of angry words punctuated with lots of swearing.

We could not leave because Josh, who seemed glad to get out of the room with lots of people in it, was now happy to be in a stall and insisting that he had to poo.  Then he started laughing and clapping and saying, "Wanna go poo poo on the potty" over and over again.  The woman continued with her verbal barrage of swearing and, in the background, I could hear my husband's sermon as he talked about the true meaning of Christmas or something like that.  It was, to say the least, an odd moment.

All I could think about was 1)  What am I going to do to get out of this situation? and 2)  We have got to get this kid more independent living skills.  Finally, I convinced Josh that we were done and we high tailed it out of there.

This situation underscored for me the lesson that there are a lot of things that I can't control.  I can't control the fact that my baby is growing up.  I can't control when Josh has to go to the bathroom.  I can't control his anxiety.  I can't control how other people respond to Josh.  AND I can't control how quickly his life skills develop.  What I can control is my own response to all of these things.  I can either live in anxiety about the problems that will come as Josh grows older or I can just take each situation as they come.  I can either be angry right back at people who can't deal well with Josh or I can try to have a sense of humor about it.  Difficult and surreal moments are a part of the journey.  I can let them get to me or I can laugh about them and learn from them.

Four Extroverts

Josh cries to express his frustration or displeasure but he doesn't have the words to complain.  Sometimes I wonder, what would he complain about if he could communicate like a typically developing 10 year old?

One thing that I can think of that he might complain about is how extroverted the rest of his family is.  Josh's parents and sisters are all raging extroverts.  We love to talk, relate to people constantly, and talk about relating to people.  Parents of other kindergarteners complain to me that they can never get their kids to tell them about how their day was.  Anna would give me a minute by minute explanation of how her day went and how she felt about it if I didn't stop her.  We're talkers.

I grew up in a household of introverts so I think I had a vague sense of growing up wishing that people would talk to me more.  More often than not, weekends were spent with everyone reading books in separate rooms.  Car trips were usually quiet and reflective.  That drove me crazy but, then again, I didn't really know any better (or different).

The household that I am shaping is not so quiet.  We have a constant flow of people over at our house.    We have vivacious conversations at the dinner table about all manner of topics (although, usually scaled down for the kinder/ 1st grade crowd).  We usually do one round of "What was your highlight or lowlight of your day?" every day.  There are a LOT of questions asked and conversations that start with, "You know what I was just thinking about?"  People don't just think quietly around here.  We have to TALK about what we are thinking about.

I am not sure but, even if Josh had the cognitive ability to be more verbal person, I think that he would be an introvert.  He really enjoys time alone (preferably with music) and seems quite happy to just chill out in his room.  Josh is also happy to just sit together on our couch, not talking, just being together.  Physical touch is a bigger "language of love" than talking.  Sometimes, when his sisters (and their chatter) come home, he runs as fast as he can to his room and buries his head under his blankets.  Josh's proclivity towards a more introverted lifestyle reminds me that we don't always have to be socializing or talking to be happy.  I think I need that.

Especially during this holiday season, our life is full of parties, gatherings, celebrations and other such extroverted interactions.  While I really enjoy this, in general, today my spirit felt too full of talk and people.  I think that my girls felt the same because when they asked me what we were doing today and I told them that we had no plans and that we were just going to stay home, they seemed happy.

Everyone is in separate rooms reading or listening to music right now so I think I will also try to have a more introverted moment.  After I finish sharing my thoughts with you in this post :)

Persistence

This week I had a number of frustrating phone calls and interactions with service providers who are supposed to be providing services to Josh but do not or do not provide it well.  Rude or irritating comments made by various people that I talked with this week are still bouncing around in my head:

       "I'm sorry but you missed the deadline for that program.  I thought I told you about the deadline the last time we talked . . ."

       "I thought I already called you back about that."

       "This isn't the right department for that inquiry."

       "Ma'am, I'm just not allowed to tell you any more about that."

       "That program is no longer funded."

By the end of the week, I just wanted to scream from all of the pent up frustration from dealing with bureaucracy.  I mean, do they intentionally stack these organizations and governmental departments with unhelpful people on purpose to make already stressed out people like me feel even more stressed?

I consider myself a decently bright person with a lot of drive and persistence but sometimes I just want to give up when I face such tension producing interactions.  I  know that a lot of parents of kids with disabilities feel the same way.

As I've been battling the systems and paperwork that are involved in my job as a mom of a child with disabilities, somewhere in the back of my mind, I've been thinking about another woman in the Bible who was dealing with the many needs of her family and a more than frustrating system that was not serving her well. In Luke 18:1-8 Jesus talked about a widow who was desperate for justice.  She kept going to a judge, the face of the current governmental system that she had to work within, to seek to have her needs met.  According to the passage, this judge who "neither feared God nor had respect for people".  In other words, he didn't really care about doing the right thing or about helping people get their needs met. Yet, because of her persistence, he decided to grant her request, presumably because he was just sick of dealing with her.

Jesus tells this strange little story and then asks, "And yet, when the Son of Man comes, will he find faith on earth?" Apparently, this persistent widow is an illustration of the kind of faith that He is hoping to find when it's time to really see who is a person of faith and who is not.

 Jesus affirms this kind of persistence.  In fact, He seems to equate it with "having faith".  I don't think that this means that Jesus wants to His followers to be annoyingly driven, demanding people.  But, there is an insistence on hoping for something and working toward that hopefulness that I do hear in Jesus' teaching about this woman.  Through this story, I hear Him saying, "Don't give up.  Keep asking."

These are a few thoughts about persistence as I consider this passage:

1)    Being persistent means sometimes skating on the edge of being annoying.  I think that sometimes, I avoid asking for things again and again because I don't want to be seen as demanding or out of touch or desperate.  But, you know what?  Sometimes you just have to not worry about how you appear and focus on doing what you need to do.

2)     Being persistent is risky.  It's easier to give up because, then, you don't have to face the pain of things not working out or the frustration of things not working out for a long time.  It's easier to not hope for something than to go on hoping and wanting something but not being confident that you'll get it.  Yet, despair is no real solution and the best option is to keep putting yourself out there.

3)     We should especially be persistent about asking for things from God.  At it's core, this story about the persistent widow is not a teaching about activism or a "how to" on navigating bureaucracy.  It's about prayer and being persistent in asking for what you need from God.  This is a good reminder to me that the state that I live in does not ultimately meet Joshua's many needs.  God does.  I have to work it out with God.

I want to be persistent like this widow.  I want to be determined to fight for what we need even in the face of an injustice, unkindness and lack of care.  I want to be that way the next time I talk to my insurance representative as well as our regional center service coordinator.  I want to be like this woman the next time I talk to Jesus about what I really need.