Happy as a Clam

 

When we first arrived at our friends' beach house I was already a mess.  I was afraid that our unruly, chaotic mop of a dog would pee in their house.  I kept thinking about all of the things which I had forgotten to pack.  It was hot.  I was already tired.  Of course, the biggest worry, as always, was about how Josh would do.  This was a place where we had never stayed before and Josh is always stressed by new places.  

We always let Josh stay in the car as long as possible while the rest of us unpack the car and get situated in any new place.  Alex brought all of Josh's accoutrements into the room which he would get to stay in all by himself: his stereo, his Ipad, his magnadoodle toy.  When there was nothing left to unpack I went out to the van to coax Josh to come in.  I can't remember if I had to bribe him with a snack . . . probably yes.  

I feel bad saying this but, with our family, going on any trip is a big fat risk.  We're definitely had our share of family trips that have spectacularly NOT gone well.  For the past twelve years, we have had the most success vacationing at our dear friends' lake cabin in the mountains.  Josh gets to stay in the basement family room where it's quiet and he gets his own space.  He loves it and he knows what to expect.  If he hears us mentioning "the lake cabin" Josh will start saying "wanna go to the lake cabin" over and over again.  But this year our friends are in the midst of a remodeling project so it wasn't an option.  Also, we happen to be in the middle of a pandemic this summer so we assumed that we would just stay put.  Just when being in our house was going to drive us fully bonkers, some other friends reached out asking if we might want to stay at their beach place about an hour away.  Uh, yeah!

Today is our third day here and we finally felt ready to take the risk to take Josh down the mini-hike down to the beach.  The last time we took Josh to the beach, he didn't like it and he wanted to go home right away, which was a bummer for the rest of us.  But the beauty of this place was just so ridiculous that we had to try again.  Hope went down earlier than the rest of us and she texted me, "MOM! THERE ARE DOLPHINS!"  I looked out of the main bedroom's window and, sure enough, I could see a pod of dolphins frolicking in the water below not far from the shore.  

That was it.  I summoned the energy to pack up all of our beach stuff and drag Josh down the path and three sets of very steep steps down to the beach.  He was scared but he held tight to the guard rail and my t-shirt and carefully headed down.  

It was pretty much love at first sight.  Josh plopped himself down in the wet sand and, for the next two hours, delighted in the sensory input of the cool waves hitting his body.  He was like a little brown lighthouse of joy, waving his arms in the air, laughing loudly and saying some of his favorite words;  "feelings!", "abortion!", "cocaine!", "train!".  Several people walked by and gave us a smile.  

Alex and I took turns closely supervising him in the water while admiring how well the girls had taken to boogie boarding.  We each got some time to ourselves under the umbrella to read as well.  

To top it all off, I quickly found that if I dug into the wet sand a little bit with my feet, it was not too hard to find clams!  Be still my immigrant heart!  Not only was this day going so well but was I going to have FREE seafood to cook for dinner as well?  This is crazy!  

Ok.  Not everything in a given day has to be perfect in order for a day to be wonderful.  It turned out that there is a quarantine on shellfish in this area because of an abundance of a certain marine bio-toxin so we couldn't eat the clams.  Also, one of my supposedly independent teens elected to not apply sunscreen prior to swimming in the ocean for hours so some amount of wailing about crispy skin ensued.  But we all agreed that the day had been very good and we were filled with gladness and gratitude.  

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.

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!

How Josh Helped us to Interpret the Bible

Last week our family went for our annual trip to a friend's cabin in the mountains. Together with another family of five, we spent the week laying around, cooking good food, exploring streams and having daily group morning devotional times (among many other wonderful activities).

We've known this family for decades and have vacationed with them for the past five years in a row.  I really appreciate that the three kids of this other family are all very tenderhearted toward Josh and try to help him out whenever they can.  One evening we had a discussion about what it's been like for them to grow up with Josh as a "cousin" and they had insightful things to say about how being in relationship with Josh has made them more sensitive to others, especially those who have special needs.

One morning, the mom of the other family led us in an inductive Bible discussion of Ephesians 4:26-32.  Our kids range from age 7-15 and we have just barely become a group that could have a brief discussion of the Bible together.  It was a bold decision to try to have this kind of devotional time with this crew, especially with my wiggly troupe.  It went surprisingly well.

The part in the middle of the section goes like this:

"Let no evil talk come out of your mouths, but only what is useful for building up, as there is need, so that your words may give grace to those who hear.  And do not grieve the Holy Spirit of God, with which you were marked with a seal for the day of redemption"

One of the kids asked, "What does it mean to grieve the Holy Spirit?"  After we defined what it means to "grieve", we wrestled with the question of why it might make God sad when we don't treat each other very well.  Why does He care?  What might that feel like to God?

Finally, my husband came up with an illustration that made a big impact on everyone.  "What if someone came up to Josh in front of you and said, 'Shut up, you stupid retard' ?  How would that make you feel?"

Alex barely got his question out of his mouth before all of the children (except Josh, who was listening to music on headphones) gasped with furrow-browed, open-mouthed, passionate indignation. Hurt and a sense of injustice flashed on each young face.

"Why would anyone say that?!"

"I would want to beat them up."

"That would make me really, really sad and mad."

We had had a conversation earlier in the week about the "r-word" and about how it's inappropriate but that some people use it in reference to kids like Josh.  We were all aware of how hurtful words like that are.  (Actually, we had an interaction similar to the one Alex described when we were at the library the other day.)

Alex explained that how we felt was sort of like how God feels when we treat each other badly and refuse to reconcile with one another.  It grieves Him.  Just like we all want to protect Josh and make sure that he gets treated well, God feels that way about every one of us.

I was struck by the emotional and theological richness of the moment.  Because we all have relationship with Josh, a vulnerable person with many, many needs, we have a deeper understanding of what humanity is like before God and about how God feels about the brokenness of human relationships.

The emotional impact of the illustration made the truth of the scripture sink in.  My girls have mentioned this scripture to me several times since we've returned home, noting that they want to be better at not being angry at each other because they don't want to grieve God.  They asked that I print it out so they could put it up on the walls next to their beds.

Even though Josh was listening to music on Pandora on my iphone during the whole devotional time that morning,  I treasure how he was (and is) involved in expanding our understanding of God just by being who he is.

The ABCDs of Summer Special Needs Survival

Well, summer school is over and so is our week of family vacation.  Ahead of me is 33 potentially tedious and stressful days of keeping my kids occupied before school starts back up.  Although the girls still have some day camps, Josh is at home with me all day for most of those days. This morning I had a momentary flash of panic.  How am I going to keep my sanity while juggling the kids at home during this second half of summer?  How can I arm myself for the unavoidable moments of conflict, stress or boredom that are likely to present themselves?

While searching parenting websites I saw something that both amused me and gave me hope.  It's called the ABCDs of a parenting bag of tricks for avoiding a meltdown or easing a tense situation.  A for amuse, B for  bribe, C for comfort and D for distract.  

I was thinking about how I can apply this with a child with special needs.

Amuse.  It's tricky to know what will amuse Josh.  He often just starts laughing and it's hard for me to know why.  It's hard for me to share his joy or amusement because it often just seems to come from no where.  Also, Josh doesn't seem to care if someone is laughing with him.  Still I do know two things that amuse Josh to no end: a brisk breeze and music with a good strong beat.  I am going to spend more time walking with Josh along the Bay and I'm going to get out our electric fan.  Also, I need to find more clean rap stations on Pandora (if that exists).  These things are not technically "funny" but they make Josh laugh so I think it counts.

Bribe.  Motivators are often difficult to think of for kids with autism.  They are simply not motivated by the typical things that kids want like toys, money, verbal affirmation or the promise of anything that takes place more than 2 minutes from that very moment.  Over the years, I have had to get very creative to even be able to think of things to bribe Josh with.  Sugary food always works but I don't want Josh to gain a lot of weight so I need to think ahead about what else I can use to bribe Josh.  Thus far I can think of the following:  1)  watching YouTube videos of people installing shower heads,  2)  being wrapped up in the comforter on my bed and being squeezed and 3) anything having to do with playing with water.  When the kids get overtired or bored or stressed, I have been known to just march right outside and spray a big spring of water high up in the air and let my fully dressed kids get soaking wet. We call it "carwash" but it's more like kidwash.  It seems to me that they key to bribing well is to think ahead about what are things that you'd be willing to use as bribes that you won't regret rather than turning to something in the moment that you don't really want to use as a motivator.

Comfort.  Josh has always been the child who is most likely to want to snuggle.  However, lately, he's exhibiting more pre-teenish desire to be physically independent.  To my dismay, he often doesn't even want to hold my hand while crossing the street!  Sometimes, when I snuggle in with him in bed he will say, "Want Mama to go away." This is very sad for me.  Without physical touch, how do I connect with Josh?  Strangely and fortunately, there is one thing that comforts my son to no end.  Like many things in the autism world, it's a little bit weird.  Josh likes to sniff my hair.  Yes, I do take showers and I don't think my hair smells any different from anyone else's hair (I think) but, for some reason, when Josh is stressed, one of the things that comforts him the most is being able to stick his face right up to my long black ponytail and taking a couple of good whiffs.  There have been many an anxious moment at a busy Safeway where Josh suddenly announces, "Wanna smell Mama's hair!"  And if I'm desperate enough, I let him do it. Yep, right there in the middle of the grocery store or whatever.  Odd it is, and we will definitely have to fade this behavior at some point but, for now, it comforts my son and I need this tool in my pocket to survive the summer.

Distract.  In order to survive any outing with Josh, one must have lots of music. . . . car stereo, ipod with headphones, chimes on one's cell phone, whatever.  If you ever get caught in some situation without music, you must distract Josh by singing one of his favorite songs, the louder the better.  The other day we were waiting for my daughter's swim lesson to be over and Josh was just on the edge.  He started whining loudly and demanding to go home so I had to sing "Party Rock Anthem" and dance with him in circles under a tree at the park.  Instant distraction!  It bought us the 6 more minutes that I needed for Anna's lesson to finish.

Reflecting on these ABCD's made me realize that the main point of them is to take it easy and to not let the situation spiral in a negative way.  I also need to think ahead so that I can amuse, bribe, comfort, and distract myself at times so that I can keep it mellow and not buy into being too stressed out, tense or angry as we walk through the second half of summer.

What about you?  What's in your parenting bag of tricks so that you can have a good rest of the summer?

Joshua's Happy Day Poem

Spending three hours at a big pool with a mushroom shaped thing that overflows with loud falling water.

Coming home to a snack of avocados, tomatoes from Mom's garden, fresh crusty bread studded with roasted garlic, and almost a whole bag of frozen mangoes.

Realizing that I know how to sneak marshmallows from the pantry while my mom is distracted.

My tired sisters reading silently in a room where I am not.

My mom kissing me with her eyelashes causing me to laugh really hard for a long time.

The prospect of spending the rest of the afternoon in my bedroom with loud classical music and the freedom to draw showerheads and hairdryers on my magnadoodle over and over again.

Sheer summer bliss.


By Joshua Van Riesen
(as intuited by his mother)

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.

A Perfect Summer Day

This summer has been a tough one for Joshua and his Mama. Top 5 things that Joshua has been up to that has driven his mom crazy are:

1. So much crying for apparent reasons and no apparent reason

2. Eating lots of non-food items like rubber stamps, video tape (see previous post), toilet paper, entire pages of beloved books. He has also gotten into eating pseudo-food items that are still completely inappropriate like previously chewed gum that has been stuck to the side of a public garbage can. I'm not kidding.

3. Demanding random videos that I rented from the library many months ago. He would ask for them over and over again for hours. "Want Baby Galileo. Want Baby Galileo. Want Baby Galileo"

4. Pouring liquids into strange places (like my coffee into his toy boxes in his room). Pouring water onto floors, etc.

5. Intentionally peeing on the floor (or onto piles of clothes) in his room. This one made me the most crazy. One time he peed on a TV/VCR that was on. He could have electrocuted himself! We were way beyond this in his potty training journey but suddenly, he went way backward with this behavior.

So, yes. Difficult summer.

But I have to tell you about one day that was wonderful.

A few weeks ago, we were at a friend's cabin in the mountains for a week. One day, we rented a boat and spent the good part of a day on a lake. We explored various places around the lake, went hiking, and soaked up the glorious sun.

Of course, I was worried about how Josh would be. There's not really many places to escape if he's having a hard time on a boat. But Josh loved it. The hum and vibrations of the motor, the sound of the water, the slightly cool breeze; these things were pure sensory pleasure for Josh.

A friend, the dad of the other family who was with us, decided that this was the day to introduce Josh to hiking. Josh did shockingly well with it. We couldn't believe how hard he worked to climb up rocks and walk up hills. Josh even jumped off of a rock into the lake (with some help). He swam. He ate watermelon quietly. He even told me when he needed to go to the bathroom.

And, as everyone knows, if Josh is happy, Mom is happy. I was so happy. How I want this kid to be happy. . . from the bottom of my soul. I know that I can't control this. I have little power to make this happen. But when it does, it's so wonderful. A professor of mine once told me that "a shared joy is a double joy". I want to share with the world about one perfect summer day!