Our Neighborhood Walk

Almost every day since the the pandemic started a year ago, we have been managing being homebound by taking a walk around the neighborhood with Josh and our dog.  On most days it's my husband, the dog and Josh.  Sometimes the girls and I go along.  Today, my sister's whole family and my mother came along, all of us masked and trying to walk with some amount of distance from one another.  

Our neighborhood is generally quite nice with small to mid-sized homes, decently attended yards and old trees overhead.  People express their friendliness by putting out boxes with extra fruit such as lemons or oranges for anyone to take.  We pass three of those "Little Free Libraries" during the course of our walk.  People are friendly in a "look at you and smile" kind of way not a "randomly start to talk to someone you don't know" kind of way.  No one seems to be weirded out by Josh.  

All in all the walk is about 1.1 miles or 6000 steps and takes between 20-30 minutes depending on how slowly Josh is walking.  Josh takes his time, clapping as he goes.  Sometimes he stops to enjoy the sun on his face or to look at a leaf and possibly taste it.  He knows the way but he has to be watched lest he get stalled or decide to eat some inappropriate item.  

It's always the same walk, down the same streets, on the same sidewalks, making turns at the same places. My husband and Josh take great comfort in the sameness of the walk.  To me, for a while, it felt boring and a little mind-numbing.  Why can't we ever explore other parts of the neighborhood?  Must we always go the exact same way?

A therapist friend of mine recently told me that humans find great comfort in routine, especially during times of stress.  This must be true about our walk especially to the more routine-loving members of our family.  Josh is very committed to the exact pattern of our walk.  If I try to walk on the side walk on the other side of the street from what he is used to or to cross the street in a slightly different way, he resists heartily.  He feels very strongly that there is a way to do this walk and it's a very good way . . . not to be messed with.

One time, a mom was coming down the sidewalk toward us herding twin preschoolers each with their own scooters plus she had an infant in a carrier on her front.  I could see even as she was further away that she was going to have a hard time moving to the other side of the street to avoid us.  I tried to get Josh to go around them on the street and he wasn't having it.  The more I insisted, the more Josh got upset and started screaming and hitting himself on the head.  I apologized profusely as we had to pass each other, uncomfortably close given the county health guidelines of remaining 6 feet apart from people who are not in your household.  She didn't say anything back to me, perhaps because her mask was in her hand, but her eyes told me that she understood and wasn't judging us.  

Since that time, we got help from Josh's Orientation and Mobility (O & M) instructor at school to work on having Josh practice going around a parked car in the street every now and then to practice "giving way" on the side walk.  At first Josh did it for goldfish crackers, then just for verbal praise.  Now he can do it whenever we ask him to.  Being flexible with his routine is not his favorite thing but he's gained some amount of elasticity over time.  

I realized today how blessed we are to have our little walk.  Having done it hundreds of times now, it feels like a comforting thing, a chance to notice simple pleasures like fresh air, trees, different flowers that bloom around the homes of our neighbors.  We know which house is being sold and which one is doing some remodeling.  We wonder where the little white dog has gone since we haven't seen him in his backyard for a while.  This routine has made our neighborhood more "ours" and has given Josh a safe way to engage with it.  

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.

Overnight Summer Camp: Pick Up

Yes, I was a bit of a mess while Josh was gone at overnight camp;  not a full blown "can't deal with my life for a while, send out a mass email to all of my friends, stop meeting the needs of the rest of my kids" mess but a more subtle, internal mess.  My thoughts kept wandering toward dark scenarios of Josh getting lost in the woods or crying all night.  I kept having that jolting feeling of realizing that I've left my cell phone somewhere but then I would realize that it wasn't my phone, it was my first born, my thirteen year old baby who NEEDS ME DARN IT!

But surely, they would call me if he was having a really hard time... and they did not call.  So I tried to enjoy my weekend.  I went to my daughters' musical performance that came at the end of their summer day camp.  I helped them run a lemonade stand in our driveway. I took them out to a movie.   Admittedly, all of these things were much easier without also managing Josh.  I tried really hard to let it be a true respite weekend.  On Sunday morning at church, I had someone pray with me so I could let go of my worries and be more of a mom that trusts my son into God's hands.

Finally, after lunch after church, the girls and I drove back up the hills to the respite camp.  I race-walked to the check out station and signed all of the forms.  It seemed to take forever for Josh and his counselor to come out and when they did, my beloved boy had a silly hat on his head and a smile on his face.  "Hi Mama" he said, without prompting.

I asked his buddy how he did and this is what she said, "Honestly, in my three summers of being a counselor at this camp,  Josh was the easiest, most happy camper by far."  She told me that he had not once cried out or gotten upset.

She handed me their schedule/ list of activities and it turns out that Josh gladly participated in the following:

- Rode a horse
- Swam at a pool party with games (where he won the prize for "Best Underwater Dancer")
- Attended a dance after dinner
- Participated in a squirt gun fight
- Made a hand puppet
- Watched a talent show
- Ate a lot at an ice cream party
- Made sand art
- Packed up his own bag
- Enjoyed a slide show of the camp and picked up his camp award.

My relief was like a fresh wind on a scorching day.  What is this new world that we are in?  What is this new reality where I could possibly have a few days off and my son is having fun??!!

As I drove down the hill with my beloved son, who is no longer my baby, I realized that I had a little bit of sadness mix in with my joy.  He does not always need me in the same way as he has.  For all of my talk and goal setting about independence skills, honestly, that's not as easy for me as I thought. I'm used to being the one who keeps this boy alive day in and day out.  I am learning that letting him grow up means getting a chiropractic adjustment on my sense of my own identity as a special needs mom.   It's a little painful but I'm glad and willing.

Overnight Summer Camp: Drop Off

She drove an expensive looking SUV and had an accessorizing small dog.  Her shoes, hair and nails looked like they would be appropriate in a big law firm or a clothing boutique where one makes appointments to be assisted in shopping.  Everything about her said "put together" except for the expression on her face.  Her mouth and her eyes exuded the same apprehension that I felt.  She seemed stressed and distracted as she helped her daughter out of the car, which was right next to ours. The girl, blond, well groomed and about Josh's age, had Downs Syndrome.  She seemed unsure as well. They must have been first timers.

I wondered if this girl's mom was also doubting herself for signing her child up to be dropped off at this overnight respite camp for the weekend.  Did it feel wrong to her to leave her daughter who had so many needs in the hands of people who seemed to run a good program but didn't know or love her child?  Was she tempted to drive back home and protect her beloved child with the safety of known routines?

I happened to have a dog with me as well so we chatted briefly about our dogs.  We did not talk about our children.

Had we been in a different context, we probably could have talked for hours about the complexities of raising children with special needs.  We might have given each other advice about how to forge our own path when our kids are not neuro-typical.   Maybe we would have compared notes on the zillions of programs, doctors, and therapies that we've tried.

But we were not there to be friends or compatriots, we were both there to drop off our kids at overnight summer camp.  I have been taking Josh to the Saturday day program at this camp for kids with special needs every couple of months for the past year.  Josh has done well but he has never gone anywhere overnight without either Alex or me.  An overnight is a completely different thing because it involves meds and, well, sleep.  Establishing good sleep has been a long, Tolkienian journey for us.  Also, Josh is not at a place, cognitively, to understand that I would be dropping him off on Friday morning and then picking him back up on Sunday afternoon.  What if he thought that I was just leaving him there?  He has no way of asking questions like, "Where is my mom and why are we doing this thing that is so out of our routine?"

And the med thing is complicated too.  If Josh does not get one of his meds, he will eventually dehydrate and pass out and, possibly, die.  Also, if he doesn't get his artificial cortef, the "fight or flight" hormone, he could fall into seizures or, even death.

Even with these dark scenarios, I couldn't help but to smile a bit when I reached the front of the line at the nurse's check in station.  Some of the kids who had already been checked in had come with multiple bags of medications that made our stash look minuscule in comparison.  The keen and appropriate questions that the nurse asked me assured me that they knew what they were doing. Everything was neatly documented and double checked.

Josh's one-on-one buddy for the day, Andrea, was chatty, energetic and confident, like a compassionate chipmunk.  She walked us to his cabin and reminded me that there would be two staff on duty in the 20 kid cabin all through the night just in case there was a need.

Josh seemed serene and mature.  After we went over all of items in Josh's overnight bag and double checked details about his personal routines, Andrea asked Josh if he was ready to go horseback riding.  After doing a little hand flapping, Josh stood up and said, "Yes".  My heart both rose and broke a little as I drove down the hill from the camp.  Oh, man.  I hope I'm not a mess this weekend.

Preparing for Summer Camp

One of my goals for this past year has been to get Josh ready to go on a three day overnight camp at a respite center in the mountains about a half an hour from our house.  My baby just turned thirteen this week and I know that he needs to stretch his wings and experience more of life independent from us and from the emotional safety and auditory comfort of just listening to music in his bedroom.

Every other month, this past year, Josh has gone to a day long camp on a Saturday at this camp which has been especially designed for youth and adults with special needs.  He's done well spending the day doing various campy activities like swimming, hiking, and attending an evening dance all with his one-on-one buddy.  Last winter, the camp trucked in a huge pile of snow and Josh enjoyed slipping around on it on a sled.  Another time they went to a baseball game together.  Each time Josh has seemed to enjoy it.  I am encouraged by the fact that when we drive up to the camp, he seems relatively willing to get out of the car and engage in the activities of the day.

In less than two weeks Josh will go for his three-day stint.  Even though we've been building up to this all year, I feel really nervous.  How will he do at night?  Will the nurse keep track of his medications?  How will toileting go?  What if he hates it and feels like we've abandoned him?

So much of parenting is about making sure that things go well, being prepared, protecting our children.  This feels especially true for a child who is visually impaired, has limited verbal communication skills and has to take daily medications in order to live.

Yet, my life experience and my faith tells me that if you don't take risks, you don't grow and you don't really live.  And I know that taking (hopefully, wise) risks is a huge part of the teenage years.

So I'm nervously looking forward to what this adventure might bring.  I'll let you know how it goes.

Sand, Saltines and Consequences

The other day I walked into Josh's room to find that he had taken an entire sleeve of saltine crackers and had crumbled them up into fine, sand-like granules all over the floor of his room.  Playing with sand has always been a favorite activity for Josh.  Particularly, he loves to watch sand falling through his fingers.   He could sit for hours lifting a handful of sand up to eye level, watching it fall, then laughing like crazy. It must be wonderful and beautiful in a way that my non-autistic brain just can't understand.  I let him do it at playgrounds and at the beach because it makes him so happy and it keeps him busy while his sisters are running around.

While I'm glad for Josh's ingenuity in recreating this beach-like scenario in his own bedroom, I have to admit that I was livid when I found the cracker crumbs covering the floor in his bedroom and his bed.  The moment I walked into his room, Josh must have known that I would be upset.  Before I could say anything, he echoed something I have said in exasperation many times, "Ohhh, sweetie!" (except with a more loving, compassionate tone than what was about to come out of my mouth).

Now, usually, when I find a shocking mess in Josh's room (in the past it was poo on the walls or coffee poured into his desk drawers) I usually get him out of the way and use my massively pumping adrenaline to power me through a vicious, dragon-mama cleaning process.  Miraculously, this time I had the presence of mind to make my son deal with the consequences of what he had chosen to do.

I took a deep breath and said, "Josh, you need to clean this up."

"No" my almost-adolescent said to me.

"Yes, Josh.  You need to vacuum."

Josh sat there silently, not looking at me but clearly waiting to see if I would really make him face the consequences of his mess.  He has never used the vacuum before because he has had a strong negative reaction to the sound of the vacuum.  Along with lawn mowers, blenders and crying babies, vacuums have always been his auditory kryptonite.

I took his hand and walked him to the garage.  I pointed to the hand held mini-vac.  He knew exactly what this meant.

After he tried the mini-vac on his carpet (which didn't work) I made Josh go get the regular big vacuum.  I'm proud to say that we cleaned that room up without my ever touching an implement of cleaning.  I just gave verbal prompts or pointed and waited for him to figure it out.  It took a loooooooooong time but he did it!

Through this experience, I realized the following things:

1)     I still do way more FOR Josh than I need to.  I do things reactively, just to get them done when I should be letting/ making Josh do things for himself.  I need to curtail my motherly impulse to do things for my child and make him learn to do it by himself.

2)     All children (even kids with special needs) need to learn that there are consequences for the messes that they make.  If we don't give them some sort of immediate consequence that they understand, they will keep making those messes.  Since Josh is going to be living with me for a lot longer than when he turns 18, I am very motivated to train him to stop making messes like this.

3)     Josh can accomplish things that I often don't imagine him being able to do.  I had no idea until this day that he could handle the auditory challenge of the vacuum noise.  I wouldn't have guessed that he could wind the cord back up onto the back of our vacuum.  Josh can figure out how to get the vacuum back to the garage and he totally knows where it goes.  I could have gone a long time without realizing these things because I always do the vacuuming in our house.

So now, there is one more chore that I can get help with around our house.  A stumbling block has been turned into a stepping stone to something new!

The Red Vest and Hope for the Future

Have you ever reached a milestone and not even noticed it only to realize that you've been working toward getting there for a really, really long time?  I remember one day in college when I realized that I was no longer putting much of my day's energy into being insecure.  I just stopped in my tracks one day as I walking through "the quad" of my college campus and thought to myself, "Wow.  I used to be so consumed by negative thoughts about myself and now, I'm not . . . so much."  It's like I had been walking, walking, walking toward a certain direction and then when I got there, I turned around and realized that I had walked about five thousand miles.  Sometimes, you just have to stop and celebrate how far you've come.

Today is one of those days in my life of parenting Josh.  It was a normally chaotic school day morning.  Alex was entangled in some sort of high level conflict mediation with the girls so I picked up Daddy's usual mantle of getting Josh out the door to his bus.  I could hear the honk of the bus in front of our house and I thought of the line of cars that was probably beginning to grow behind the little yellow bus so I rushed to get Josh out the door.   Suddenly, I realized that I needed to put the field trip permission slip into Josh's backpack so I started barking orders to my usually very passive son.  "Josh, put your shoes on!  Josh, put on your red vest.  It's cold outside.  C'mon, go, go!  The bus is waiting!"

By the time, I got his permission slip ready to go, Josh had not only put on his shoes and vest, he had zipped it up and was dragging his backpack out toward the bus.  I took one look at him and was smacked in the head with a realization:  Josh had fastened and zipped up the zipper on his red vest all by himself for the first time ever!

You need to know that we have been working on his fine motor skills since he started physical and occupational therapy which was before he could even walk.  Due to low muscle tone and his visual impairment, learning to do every "normal" task whether opening a door to walking up stairs to putting on his underwear is a big project. We have to do a task analysis, get a strategy for training and practice it a million times.

Josh has been working on zippers and snaps and buttons for at least 8 years now to no avail.  Not only are these things very difficult for his clumsy little fingers, he's just not motivated to do them and (with his visual impairment) it's difficult for him to see little things like zippers well enough to manage them.  He doesn't care that "big boys" can do these things by themselves.  To this day, he just wiggles his jeans down when he needs to go to the bathroom rather than unsnapping and unzipping because he can't manage the snaps or buttons.

Honestly, I never thought he would be someone who could zip up his own jacket without help.  I just imagined a life of helping him with these things.  Yet here he was zipping up HIS VERY OWN VEST!  My mama-pride knew no bounds!  Despite the waiting school bus and the long line of waiting cars behind it, I could not resist taking a moment to snap this photo.  I almost wanted to go up to every car waiting behind that bus and tell each of them, "Hey guess what? My son zipped up his own vest today!"

Josh's sudden ability to zip up his own vest gives me immeasurable hope for the future.  If he can master this, maybe someday he can he could fully go number two all by himself, wiping and all!  The thought of saying to my son, "Hey Josh, go take a shower" and having him be able to do the whole thing by himself makes me giddy with joy!  Better yet, what if he could discern for himself that he needed a shower and then took responsibility for his own personal hygiene?  This is crazy but why not?

After all, despite long, long seasons of non-growth, suddenly things can change and people do move forward.  Sometimes it takes forever but anyone can learn and grow.  And when growth happens we have to mark it, celebrate it and take it as a gift of hope that there are more good things to come for the future.

Mama's a Liar

The other day, Josh came home with a hankering for dried mangoes. He was  determined to find our massive Costco sized bag of sticky, sugary dried fruit in our cupboard and was requesting my help assertively and repetitively.  "Want dried mango. Want dried mango.  Want dried mango."  I think he must have said it around 20 times.

I replied, "Josh, it's all gone.  No more dried mango.  Here, let me cut you an apple."

"Want dried mango."  Josh said one last time for good measure.

Because Josh is a pretty compliant kid, he sat down at the kitchen table and started working on the apple slices.  I went into the den to get something and by the time I came back to our kitchen, I found that Josh had been rummaging through our cupboard with the snacks in it.  Despite having intellectual disability and visual impairment, Josh found the one little Tupperware container that had dried mangoes in it amidst the chaotic piles of little filled Tupperware which I had prepped to be thrown into lunch boxes.

Observing what had happened, my amused, sarcastic husband said, "Josh, your Mama's a liar."

Much to my chagrin, periodically throughout the next couple of days, Josh would randomly say, "Mama's a liar.  Mama's a liar."

I'm not sure what this means.  It could just be that he likes the sound of that phrase.  He used to walk around saying "Wocket in your pocket" over and over again.  Or he has certain phrases that he makes up like "Wysssse gooooch" which he likes to repeat softly to himself.   Who knows why?

A small part of me wonders if Josh is letting me know that I can't fool him as much as I think I can.  It's like he's saying, "I may have intellectual disability, Mom, but I'm not stupid."

It's easy to think that you can fool him because he's not the most aware kid on this planet.  You give him head phones and a magnadoodle and it appears that the world could end and he'd still be happy, drawing a shower head or a hairdryer over and over again.

I actually appreciate this about him on some days.  Unlike certain other highly verbal children in our household, Josh is usually pretty relaxing to be around.  Alex and I can have adult conversations around Josh without being bombarded with questions every five seconds.  Sometimes it's kind of nice being around a child who is firmly, and usually, happily in his own world.

But I am realizing that this doesn't mean that I can cut corners and tell Josh that we don't have something when we actually do.  Josh is becoming a person who has more drive and initiative than I have ever imagined.  With things that matter to him, he's not just going to roll over and accept what I say but search things out for himself.  Given the reality that Josh is eleven years old, this seems appropriate and even beautiful.  In my heart of hearts, I don't mind this at all.

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.