Celebration for Wiping!

**Disclaimer.  This post is happy but clearly about issues of toileting.  If you are sensitive to talking about that kind of thing or if you are having lunch right now, you might want to skip this one.

Somebody say "hallelujah!"  Can I get an "amen"?  Gimme a hand clap!  Let's all whoop out loud for today my son took a poo and wiped himself all without any help from anyone.

I woke up this morning to his big boy body sneaking into our bed on my side.   A few minutes later, my husband went to the bathroom and discovered that Josh had already been there.

"Oh boy!"  Alex declared.  "Looks like someone had a poo."

This is bad news because for the past two years, Josh has been able to get himself to the bathroom to do his business but was not very amenable to wiping.  Therefore, if he went in the middle of the night, he would simply pull his pants up after pooping and go back to bed.  The result was usually not pretty.

"Is there toilet paper in the toilet?"  I asked.

"Yep, right on top."

I got up and took a look for myself, not completely believing that my husband had looked very carefully.

"Hmmm."  I thought.  "But how good of a job could he have done?"

I pulled the happy snuggler out of my bed and checked.  Actually, he had done a very good job.

Then it dawned on me.  Josh had gotten out of bed, taken himself for a nice morning poo, AND HAD WIPED --- all by himself! Today was the day!!

And there was no poo in his hair or on his clothes or on the walls.  There was no pee on the floor.  All of the toilet paper had made it into the toilet.  It had all been done correctly.  I'm not completely sure about the hand washing but I decided not to go crazy with my expectations.

Yes, he's almost fourteen but this is a day that I never thought would come.

We've been in potty training Josh for almost twelve years.  He started sitting on the little training potty at age 2.  Every step seemed to take a zillion times longer than for a typically developing child.  I remember putting night time diapers on him at age 9, worried that we would stop being able to find diapers in his size wondering, "What will we do when he is an adult?"

Josh just never seemed all that motivated.  There was no desire to be a "big boy" and to be like other kids.  He was fine just to go in his pants or bed.  He was happy to have us wipe him.

He's had accidents in every possible conceivable place: in the car, at the grocery store, at the bagel shop, in other people's homes, at church, and in the great outdoors.  He even went through a season when he would pee on electronics like DVD players, portable stereos and TVs.  Ah, what adventures we've had.  I've had moments of panic in so many different contexts as I've raised my little blessing.

How many hours have we spent working on this area?  With hope against hope, we kept trying.  We had to teach him by rote, by just doing certain things over and over and over and over and over and over and over and over and over again.  We taught him to wipe peanut butter off of his arm, then his leg just to teach him how to wipe and clean something.  We had him fold exactly 8 squares of toilet paper again and again because Josh preferred to get either two or a hundred squares at a time.  We worked on the fine motor part of wiping because, at first, it was more like spreading than wiping.  It turns out that wiping is more of a challenge than one would think when you are visually impaired, you have low muscle tone and you don't really care about things being clean.

I've had consultations from multiple autism specialists, a visual impairment specialist, several occupational therapists and a physical therapist.  I am guessing that we've had at least 15 college educated people plus a half dozen people with masters degrees working on the challenge of teaching my beloved boy to wipe his bottom.  We even went to one pediatric psychiatrist with an MD/PhD for a couple of consultations.  We paid him $300 an hour to basically show me how to make fancy charts.

Like an annoying, demanding relative who lives with you in your house, toilet training has always been with us. You just wake up and keep giving it attention every day, accepting that this is a part of your life.

But now, he's done it. My son wiped his own bum successfully all by himself.  I'm not sure if we are yet fully living in the promised land of full toileting independence but we've experienced the fruits of our determination today.   I'm proud and I'll blog it from the rooftops!  In my little special needs parenting world, today hope prevails.

Grace and Stress: A Day in the Life of a Mom

Sometimes I feel like my life is so chock full of moments of profound grace sprinkled with immense stress that I can't process either one.  Today was an especially demanding, full day because my husband is out of town so I'm single parenting this week.  Here is a brief description of the mixture of grace and stress in one day.

6:33 am       I wake up to a small, formerly unfriendly dog licking my toes.  We are dog sitting Frankie who was very anxious when his owners dropped him off.  I guess sleeping at the foot of my bed has made him decide that I am worth his affection.  This is a small but welcome little grace.   I get up out of bed to let Frankie out for his morning pee.

6:58 am       I discover that Frankie has elected to take his morning poo on the carpet immediately outside of our family bathroom.  The poops are lined up very neatly, almost like Morse code.  Is he trying to tell me something?  I fly into a whirlwind of deep cleaning my carpet with a variety of chemical cleaners and two different vacuums.  Stress.

7:30 am       I coax my the girls out of bed and encourage them to get ready for the day.  They are unusually compliant.  Small but significant grace.  We need to leave the house by 8:10 so I can drop the girls off at their respective summer day camps and get Josh to his doctor's appointment.

7:45 am     I pull Josh out of bed and he is one grumpy pre-teen.  He is standing at the toilet screaming the words which I usually say to him every morning, "Aim for the middle, Josh!  Aim for the middle!" He is not aiming for the middle.  The combination of autism and visual impairment usually means that I have to clean the bathroom after every morning pee.  Today is no exception.   Stress.

8:25 am       We finally pull out of our driveway after 7 separate trips back into the house to bring out various forgotten items which are necessary for the day; sunscreen, swimsuit, snack, can of pink hair color spray.  Stress.

9:18 am    Josh and I arrive at his endocrinology appointment only three minutes late.  This is a minor miracle.  Despite my having made the appointment as early as I could in the day, they are already running late.  Clearly, these people do not understand that most autistic children are seriously not good at waiting.  Josh inhales all of the snacks that I have brought with me and has moved on to wanting to eat breath mints, the only food-like items left in my purse.  I let my son eat 13 vanilla mints, spaced out for as long as I could.  Josh and I spend some time taking selfies on my phone.  Finally, an administrator walks into our room to try to work out a complication that we are having getting Josh's growth hormone covered by insurance. Without coverage, growth hormone is several thousand dollars per month.  This lady talks to me with a mix of cloyingly sweet words and a strong undercurrent of hostility and blame. She reminds me three separate times that this complication is due to my missing an appointment six months ago.  She also tells me that I should be grateful because other patients of hers have it much worse.  Stress.  I resist the urge to talk back to her with full snark or to slap her upside the head. Grace.

10:52 am     I meet up with Josh's summer school class at at the Magical Bridge Playground where they are on a field trip.  This is a place that has just opened in our town after a number of moms with special needs kids raised many millions of dollars.  It's an amazing, inspirational, inclusive space that is designed to help kids of all abilities to play alongside typically developing kids.  Today, there is some sort of event going on with a band, free pizza and about 50 kids with special needs and their caregivers having a blast.  I drop off Josh and watch him head to his favorite sensorily safe play structure.  The kids in his class are excited that Josh has arrived and head toward him to greet him with high gives.  Big grace.

11:11 am   I arrive at my work place only eleven minutes late for our staff meeting.  My colleagues greet me with friendly, empathetic faces.  I love my job.  I love that I have a place to work and belong that uses parts of my brain that have nothing to do with taking care of children or managing their needs.  After eight years of being a full time mom, I have recently started to work part time.  I cannot express what a blessed grace this is to me.

7:54 pm    The children have been picked up from their various camps, fed, and bathed.  Medications have been given.  At evening prayer time I have to tell the girls the news that the dog of some dear family friends was hit by a car yesterday and died.  Molly was the first dog that has ever stayed with us.  She was our introduction to becoming dog lovers and dog sitters.  Hope and Anna respond with loud wailing and big, fat droplets of tears.  I imagine that this is how the wailers at funerals in the biblical times sounded except that, I think a lot of those folks where hired.  My daughters' sadness comes straight from the heart.  Out of our lamentation comes a conversation about heaven, grief and the purpose of pets in our lives.  During our prayer time, while I am praying, one of them starts to make vague whispering noises.  When we stop to ask her what she was doing she tells us that she was "praying in tongues" because someone has told her that sometimes he prayed in tongues when he was overwhelmed by a situation and didn't have the words to pray but still wanted to pray.  We decide that this was fine.  In that moment, I conclude for the millionth time that parenting is wonderful and worth all of the nonsense.

8:52 pm     I have my first moment alone all day.  I am thinking about how life is so full of  beauty, ugliness, life, death, kindness, rudeness, stress and grace all in a big, fat jumble.  Contrary to what reading Facebook might make you think, life is not a constant stream of joyful, sweet, picturesque, insightful moments.  It's more of a tangle of the good, the bad and the mind numbingly boring stuff in between.  But I thank God for His gift of reflection for it is one of the things in life that help us to digest it and make sense of it all  it.  As I process and pray about my day, Grace wins over stress.

Why I am Grateful for Josh Today

While on a pre-Thanksgiving walk with me yesterday morning, Josh began to sing a muffled version of "I Don't Need Anything But You" from the Annie soundtrack.  He knows the song because his sisters uploaded it on his ipad and he listens to all of the music on that device constantly.   I decided to join in and we sang a silly little "Josh style" duet.  I would sing most of the line and he would sing the last couple of words.

 It went like this:

Susan:  "Together at..."

Josh:  "last."

Susan:  "Together for..."

Josh:  "ever."

Susan:   "We're tyin' a knot, they never can..."

Josh:  "sever."

Susan:  "I don't need sunshine now to turn my skies to..."

Josh:  "blue."

Susan:   "I don't need anything but..."

Josh:  "you."  

Josh had no affect in his voice as he "sang" but I could tell that he was having a good time. We walked for a while like that in the woods near the little town where we have come for a few days of Thanksgiving vacation.  Josh vacillated between wanting to sing and just stopping to clap for a while, making happy vocalizations.  No one was around so just let him do whatever he wanted.  He seemed extraordinarily content.

Inspired by my son's joy and detached from the many needs of my family, my house and my life, I began to count the things that I am grateful for in my son's life.  Here are a few of them:

1.     I am grateful to be able to go on a walk with Josh.  When we were first told of his diagnosis, our doctor told us that it was questionable whether he'd be able to walk at all in his life.

2.     I am grateful for how far Josh has come in his behavior management.  He rarely bites himself or others anymore.  He has outgrown his tantrums and has only cried a handful of times at school this year.   This is amazing given where we have come from.

3.     I am grateful for the variety of foods which Josh is able to eat.  So many kids with special needs also have dietary limitations or allergies.  Josh loves to eat a huge variety of fresh fruits and vegetables.  He is my my most flexible child when it comes to food.  

4.     We have come so far in Josh's toilet training.  I'd say that we are 97% there and if we could just get him to commit to a higher level of quality control with wiping, we'd be done!  It's taken about 10 years but this is not easy stuff for a kid like Josh and we've had to divide it up into about 40 different steps which each had to be mastered.  I'm also so grateful for the dozens of therapists, aides and specialists who have helped us in his process of learning.

5.     I'm grateful for the parable that Josh is in many so people's lives.  Tim Shriver, the CEO of the Special Olympics and the nephew of President John F. Kennedy said of his intellectually disabled aunt, Rosemary Kennedy, "She walked in the house and she didn't have to do anything. Everybody loved her," Shriver recalls. "And you didn't have to do anything for her. She'd sit with you and talk to you. Play games. Swim. Walk. No earned love."   Like many people with intellectual disabilities,  Josh is my constant reminder of the intrinsic worthiness of any person.  It's the love and touch of God which gives us value, not what we can do or accomplish.  Therefore, we are free to rest, just be together and work hard since our identity is wrapped up in none of these.  

Have you taken a few moments in the past couple of days to reflect upon the things that you are most grateful for?  If not, I strongly suggest that you take time to take a slow walk by yourself or with someone that you love.  It's a great gift in making space to savor the good things of your life and to give God some applause.

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.

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?