Dental Drama

It had been over a year since the dentist started telling us that we really needed to get Josh's wisdom teeth out.  Getting there was a nightmare. My husband and I were in a protracted battle with our insurance who kept rejecting our requests for a surgical situation which would be appropriate for Josh.  I cannot tell you how angry that made me to know that I am employed and insured and my son has infected teeth rotting in his mouth but we can't get the help that we need to remedy this situation because our medical system is not built to accommodate people with special needs.  

Josh has always had drama with his teeth since he was a baby.  We brought him home from the foster family at three days old.  A few days later when we found a pediatrician for a first well-baby check, she noticed that he had what is called a "pre-natal tooth".  This meant that, for some reason, his little 5 pound body had decided that it should grow a tiny tooth in his teeny mouth before he was born.  I hadn't noticed because I was too busy being a sudden parent and too focused on keeping this new person alive.  Our doctor recommended a local pediatric dentist who also taught at Stanford and knew what he was doing even in special cases. She made a call and the dentist offered to make time that very day for us.

Dr. Adams was a calm, cool, chatty guy who let us know that the tooth had to come out because it had no root and could fall out and choke the baby.  Unfortunately, Josh was too small and young to numb his little mouth so, after getting our permission, the doctor took some forceps and ripped that little tooth right out of my child's perfect head resulting in unbearable, unstoppable screaming.  Thus, Josh's dental journey began traumatically and dramatically for him and for us.  

After we finally figured the insurance situation out we found an oral surgeon who did a fantastic job with his wisdom teeth.  Josh was not the happiest camper about going to the doctor's office but he was knocked out for the procedure itself so there was no drama there. Josh is a veteran at laying around in bed listening to music so he was happy to cooperate with the recovery.  Eating pudding and smoothies for the first few days was not bad either.

The problem came a few weeks later when we needed to take Josh to the dentist again for a follow up.  By then he was pretty wary of doctors' offices and pretty sick of people messing with his mouth.  Josh expressed firmly and loudly that he was against it. Screaming ensued. However, it had to be done so Alex laid on him and held his hands down.  The promise of a cookie when they got home empowered Josh to get over it pretty quickly and all was made well. . . until the next dental drama, I suppose.  

What I've Learned from Josh (A Guest Post from "Auntie Rachel")

I've known Josh almost since the day he was born. Susan and Alex lived upstairs from me and my roommate for Josh's first year of life. In light of his heath issues and my night owl tendencies, I had many middle of the night shifts feeding him very specific amounts since his body didn't give him appropriate signals regarding when to eat or the necessary amount. I don't know how much of it is because he was the son of my very good friends who had wanted him so badly and how much of it is because of that year of helping him to live, but I know that I've always loved Josh.

Yet it's tricky to know how to communicate that to Josh or how to have a meaningful relationship with him.

I no longer live in the same area as his family and, at best, I only get to see him twice a year. Generally, I'm good at figuring out how people work and how to build a relationship with them. With people who are important to me, I figure out how to care for them well, how to be a good friend to them, and how to help them know that they are loved.

I have no idea how to do that with Josh.

Some of that has to do with how little time I spend with Josh. Some of that has to do with how little time I spend around people with special needs, particularly autism. Some of that is just Josh and the ways that it can be difficult for anyone to fully figure out how to relate to him, communicate with him, or know what's going on for him.

Perfectionism is a struggle for me and it comes out in my relationships. I work at them. I'm thoughtful with people. I'll go over interactions to figure out what I would have liked to have done or said differently - sometimes intentionally, sometimes compulsively. The more that I care about the person, the more I work. And usually I can see the pay off for that work in strong relationships and people who feel cared for by me.

But with Josh, I don't even know what work would really look like. Despite all of my relational skills, I don't think that I could ever reach the place of feeling like I'm competent and confident at how to relate to him or how to communicate to him how much I love him.

I found myself thinking about Josh recently and aching a bit about how much I love him and how incapable I feel to really communicate that to him. But then God made me take pause. "Oh, Rachel. What's reality here?"

The last couple of times that I've visited Josh and his family, Josh has clearly wanted to spend time with me. The visit before last, it came up just a couple times. Josh likes to spend quite a bit of time by himself in his room. Most of the time others are not welcome. But he very specifically wanted me to hang out with him. "Sit, please." Josh is often polite while being rather insistent. So, I sat on the end of his bed while he drew or listened to his radio for a while. After a stretch of feeling like 'is this really doing something for him?' I got up and immediately received, "Sit, please." So, I sat.

Several months later on my most recent visit last spring, I was washing dishes on the first night and Josh came to get me and took my arm to pull me toward his room with 'Sit, please.' So we hung out. I played some ukulele for him, but I feel like it just gave me something to do. Josh just liked me being present. During the days that I was there he initiated with me so much that it stood out to the rest of the family as atypical Josh behavior. And it was often enough that there was no way to interpret it as random. We couldn't understand it, but it wasn't random. My last dinner with them, Josh was his usually quiet self while I chatted with his otherwise very talkative family. But when I got up to leave the table, there it was again. "Sit, please."

I don't know why Josh likes hanging out with me. Susan, Alex, and I have speculated about what it is about my personality or demeanor that he finds appealing. But in Josh's way, we're friends. And because I love him, that means a lot to me.

But more than that, my relationship with Josh is now a reminder that I don't have to have it all figured out in my friendships for them to become what I want them to be. 

I do think that it's good to work at relationships. They deserve and require that. But I'm never going to need to be reminded of that. I need to be reminded that my relationships aren't as dependent on my work and abilities as I think that they are. Josh is that reminder to me.

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.

Going to See Movies with Josh

Josh has seen exactly three movies in a theatre in his life. The first time was about 2 years ago when we saw The Muppets.  We brought an extra adult with us and we armed ourselves with a very expensive amount of popcorn and other snacks.  Still, Josh was overwhelmed and melted down.   Alex had to take him out to the lobby and even go for a long walk in the parking lot, missing most of the movie.  

The second time was about 6 months ago when I took the girls, Josh, and a trained autism therapist to a  viewing of the movie Planes.  Our local theatre hosts monthly "sensory friendly" viewings of films where the auditoriums have their lights up, the sound turned down and audience members are invited to get up and dance, walk, shout or sing.  It felt like a big risk to try it again but, what the heck, we live in America and kids in America go see movies.  Alex and I love movies and wouldn't it be great to be able to go to them with our whole family sometime?  I really wanted to try it again.  It felt like we were "in training" for Josh to be able to gain the sensory muscles to go see a movie.  

Shockingly, it was a great success.  Josh not only sat through the entire film but he was happy and "sang" along and clapped at various times as well.  He ate a huge bag of popcorn during the show but that was fine with me.  He actually was more calm than his two sisters, who sat on either side of me, gripping one of my arms with ferocious desperation and breaking down into sobs because of the intensity of the surround sound music and some of the tension points of the story.  They pulled it together well afterwards and now they claim that they loved Planes and talk about it fondly, as if seeing it had been a wholly pleasant experience for them.

My girls really wanted to see the new Disney movie, Frozen, during this holiday break.  At first, I planned to leave Josh at home with his dad, not wanting to deal with the energy that it takes to plan to attend something with Josh.  But at the last minute, we decided to just go for it and see it as a whole family. My niece and my mom came with us so I felt fortified in terms of adult resources in case anything went wrong.

At first, Josh was clearly anxious.  He did not want to go in and, once we sat down, held my hand tightly as if he was afraid that I might leave him alone in the dark theatre.  But once the movie started, Josh started to relax. He clearly enjoyed the musical numbers within the film (there were many).  He started to smile and giggle and remained relaxed through out the entire show.  He vocalized and clapped a little bit but was willing to quiet down quickly at my whispered encouragements.  I also handed him a tangerine every time he started talking and he was happily distracted.  Strangely, he declined to have any popcorn today.  At the end, he didn't want to leave until the credits (and music that accompanied the credits) were over.  

My son has come so far in his abilities to manage sensory input.  As a younger child, the world seemed to be a place full of auditory and visual threats.  Josh succumbed to panic, tantrums, and melt downs so much more than he does now.  I am so proud of him and I want the world to know that Josh is maturing, even within his own autistic world.  It seems odd to call "going to the movies" a risk but, for us, it is.  And if we had never taken this risk today, we would never know how Josh is growing up into a guy who can handle so much more than I ever imagined.  

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?