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.

It's Not Fair . . . but It's Going to Be Ok

"It's not fair!"

That was the absolute last time I could bear to hear that phrase today.  I couldn't stand the sound of those three supremely annoying words.  It had become a constant mantra around our household, like a breath prayer to an unjust authority (me).  I instituted a new rule on the spot.  Those who utter that phrase of abomination will have an automatic time out; a long, serious time out.

I suppose our situation is rather well set up for people to be sensitive to the injustice in every interaction.  I have two super competitive girls who are less than a year apart.  One is adopted and one is biological.  They are both external processors.  They compete and compare about everything. . . out loud. . . usually with a whiny voice.

"Can I sit behind you, Mama?"
"She got more mac and cheese!"
"Why doesn't Anna have to take Benedryl?"  (Because she doesn't have a rash, Hope)
"I read that book first!"
"Her carrots are smaller than mine!"
"You spent more time snuggling with her!"

Little statements made by little girls were killing me like a million paper cuts.  It especially makes me crazy on days where I am facing the constant hurricane blast of the many needs of the little people in our household.

Tonight at dinner, the complaints were fast and furious.  Hope came up with three things that struck her as highly unfair in rapid succession.  I took a deep breath and continued doing dishes.  Then I decided to go for it.  I used the "Special Needs Card".

"You know, Hope, I struggle with feeling like things aren't fair too.   Other moms have sons who are normal and can do normal things.  Sometimes I feel like it's not fair that Josh has special needs and other kids don't.  Sometime that feels really unfair to me.  But you know, I realized that it's going to be ok.  God gave me Josh and he's the perfect boy for me and for our family and we love him, right?"

I am not kidding you but she took about 15 seconds to think about it and she said, "You know, you're right Mommy."  And then she went and got herself some water, took her dishes to the sink, and buried her nose back into her book.

A strange, quiet calm settled into our house for just a few minutes.  I stood there in grateful awe that the conversation seemed to have had a good effect.  Then I turned my head to see a naked Josh coming to me.  He had gone to the bathroom and attempted, quite unsuccessfully, to wipe himself.  Back to work, Mommy!

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An addendum:

Later this evening, while I was giving Hope a bath, she asked me, "Mommy, why did God give you a child with special needs?"

My brain was running on low by this time of the evening so I absentmindedly said, "Uh, maybe God thought that I could handle it" while I concentrated on shampooing her head as quickly as I could.  "Why do you think God gave me a child with special needs, Hope?"

She thought about it and then said, "I think it was so you could feel His love by loving Josh."

"Wow, Hope, that's a good answer."

"Mom?"

"Yes, Hope."

"I think my answer was better than yours."

"Yes, I think it was too."

Stories

Someone recently asked me about a sentence at the end of my intro paragraph on the front page of my blog.  I have written that "I believe that stories save us."  What do I mean by that?  In general, I mean that I have experienced that as the stomach craves food, and as our skin craves touch, our brains crave stories.  That's why reading is such a pleasure and that wise preachers illustrate their points with stories.  This is why we watch TV, go to movies and listen to news on the radio, there is something deep and powerful in us that seeks stories.   Stories give us encouragement, meaning, perspective, connection, relaxation, challenge and pause.  My girls are always begging me to tell them stories about things that I did when I was a kid (like the time I stole a bag of crackers from a store when I was four . . . but that's another story).

But I have another illustration about how stories save us.  This week has been a very difficult one for me and my kids.  Everyone is still adjusting to the new school year.  Afternoons in our home have been filled with tantrums, whining and general unhappiness.  We've had several occasions where a child (who shall not be named) has gone up to her brother and screamed in his face, causing him to scream and begin hitting his head (very unpleasant).  I have been battling a headache that could not be vanquished by neither copious amounts of ibuprophen nor desperate prayer.  I needed help.

In the midst of this grumpy week, I experienced a small but welcome miracle. We had recently checked out a "book on cd" from the library of Farmer Boy by Laura Ingalls Wilder.  It's one of the beloved "Little House on the Prairie" books from my childhood and I was eager to share it with my girls.  I put it on and they were instantly calmed and mesmerized as the narrator told stories about farming, and family meals and animals and one room school houses.  My girls were able to let go of their complaints of each other as they laughed together about the antics of Almanzo, the main character, and his siblings.  I put some watercolor paints in front of them and they quietly painted pictures on recycled paper as they listened to the stories for almost two straight hours!  It was so tranquil and quiet under the stable leadership of the cd narrator that Josh even ventured out of the refuge of his room to ask for a snack.  

As parents (and as friends, as teachers, as ministers, and so many other things), it would do us well to remember the gift of story.  We ought to find ways to connect by sharing our stories.  We should work on the art of telling a good story.  We need to recognize how we are helped by the right kind of story and seek out quality stories to help us where are in our lives.  How might you be blessed by the power of a good story today?

Learning Something that's Really Difficult

When was the last time you really gave yourself to learning something that was really, really difficult?  I am 43 years old and I am finding that I have very little capacity to learn something new at this point in my life.  I have a friend in her late 30's who is taking piano lessons for the first time in her life.  Another friend who is learning how to swim.  I have numerous mom friends who are discovering a new found drive to run marathons or tri-athalons (and posting the pics on Facebook).   I'm quite impressed with all of them.  I had a brief thought that I would learn how to knit and teach my girls.  This idea was almost immediately abandoned with one glance at my daily to do list.

Learning something new can be really hard.  This is especially true if you are not particularly motivated to learn it. Or if you are a person who, like many autistic individuals, has a difficult time being motivated by much in the first place.

The number one task that Josh needs to learn right now is to wipe after he goes to the bathroom.  At 10 years old, Josh is ALMOST done with toilet training.  It's been 8 long years of adventures in potty training and my son has come a long way.  He has not had an accident in almost two years.  He takes himself to the bathroom, even if it's in the middle of the night.  The only problem is that he has not mastered wiping.  If and when it's up to him (and if he's not being supervised) he's quite content to poo then just pull up his pants and just move on with his day.  His mom is not so happy with this.

With the help of his home therapists, we are working on a strategy for mastering wiping.  The first step is to teach the process of wiping in general.  Thus, we have been practicing putting peanut butter or chocolate sauce or toothpaste on his arm then wiping it off with a toddler wipe.  We ask him to look at the wipe and answer the question, "Is it dirty or clean?"  On a good day, he can get it right about 75% of the time.  On a bad day, he does not care one bit and seems greatly annoyed that we are asking him to engage with this inane task so he just echo's whichever option was given to him second.  ("Is it dirty or clean?"  "Clean."  "Is it clean or dirty?"  "Dirty.")  On a very bad day, Josh resorts to crying and head hitting which usually results in peanut butter, chocolate or toothpaste in his hair.

Everything that Josh learns how to do for himself takes about 5 to 10 to 100 times longer than your typical person.  Using a fork, putting on a t-shirt, putting on his own seatbelt; all of these things have taken an unbelievable amount of time and coaching to master.  However, in so many of these things, ardent practice and great determination have yielded success.  Sometimes I can't believe how much he HAS learned to do for himself!

Yet with every challenge, I can feel like "this one is going to be impossible".  It's just so darn messy to make Josh keep working on wiping himself.  His visual impairment, low motor abilities, and lack of motivation results in a "poop getting everywhere" scene almost every time.  It's incredibly un-fun. Thus, it's so easy to take the short cut and just do it for him "just this once".  Yet I know that we are on a long journey and we must prevail.  I can't be wiping Josh's butt for him when he's 30.  This lesson, tough as it is, must be taught and the skill must be mastered.  I am praying for the determination, endurance and discipline that we need to help him to learn this really difficult thing.

What are the things in your life that are really difficult for you to learn?  Where do you experience the  need for determination, endurance, and discipline?

Joshua and His Dad

Well, the summer is over and the kids are back in school.  As evidenced by my lack of blogposts all summer long, it's been a full one.  New programs, new issues, new people, new therapists and new routines and a new school for Josh were all introduced this summer.  And I managed all of it.  On top of that, Josh had surgery for his obstructive sleep apnea which came with some amount of complications regarding his normal meds.  Now that the summer is over, I am realizing how much my parenting is about getting stuff done.  I'm a doer and there is always a lot to do for Josh.

Josh's relationship with his dad is different.  Alex had the gift of being able to "be" with his kids.  Maybe it's because he's a more "in the present" kind of person rather than a "plan for the future" type like I am.  Maybe it's because he had to spend so much time comforting and snuggling with Josh while I was caring for the girls when they were babies.  This sometimes drives me crazy when they are just laying on each other or wrestling when there are dishes to be done, teeth to be brushed, and other things on my list of things that should be getting done.

However, I'm glad that Josh, Hope and Anna has a father who is very present to them.  Many people in my husband's profession cut corners on spending quality time with their kids.  I know, deep in my heart, that Alex will not do that.  Even in the busy seasons, he makes time to just be with his kids.  I am more likely to skimp on being present to the kids than Alex is.  Just today, Hope asked me to play Connect Four with her and it took every ounce of will that I had to be able to turn from my chaotic kitchen and say "Uh, yeah, okaaaay. . ."

I love these pictures of Alex and Josh just being together.  Even if they are not having a deep conversation, I think that something profound happens when father and child can enjoy quality time in each other's presence.  Enveloped in the safety of sure love, there is an exchange of joy and peace.  This transcends conversation or information exchange.  Nothing is "getting done" but plenty is happening.  I want more of that in my life and in my parenting.