Christmas Vacation 2023

 That old phrase about life is what happens other than your plans is so very true!  I planned a very different "vacation" from what actually happened this holiday.  But regardless, our family time together was amazing and wonderful and I am so very grateful. My company closed early for the holiday on December 22nd.  The doors closed at noon and I actually was able to wrap up my work and be out the door by 1:30 or so.  Those who know me well, know that is pretty unprecedented.  I usually work till near to our regular closure time but I was seriously excited for vacation!  I went to my mom's and got her shopping list, went straight to the grocery store and did her shopping and came home.

Meanwhile, my wife had taken Elisabeth to the podiatrist that day for a surgery on her foot. She had a growth which he thought was a wart but wasn't sure and wanted to operate on.  It wound up meaning that she had 5 stitches in the bottom of her foot days before Christmas.

Right after I got home with the groceries and got them unloaded, Chet came downstairs and was talking with my wife and I.  About a minute or two in and he began to say he was dizzy and very hot. We got him into a chair and seated and almost immediately he began to have a seizure.  I could brace him and make sure that he did not fall and my wife called 911.  It was only about 6 weeks since his previous serious seizure incident. The doctors had thought the seizure were due to his severe shingle outbreak and we had thought it was an isolated event.

Things worsened though and the EMTs decided he should be transported to the hospital.  Once there, they discovered he had dangerously low potassium levels (likely due to the violent voiding of his stomach after the seizures) They admitted him, put him on a potassium drip, and scheduled 2 MRI's, one without contrast and one with. My wife was with him for most of this; I was home taking care of Elisabeth and her stitched foot.

We were lucky that we were able to have him discharged before Christmas so we were all together, despite stitches and seizures.  Rob came down from Maine and spent Christmas Eve and Christmas Day.  I went and brought my Mom to the house to spend Christmas Day with us.  Despite the unexpected (which is what life is) we had a happy time and made wonderful memories.  

However my days off were filled with surgical follow ups, KC's annual physical, and Chet's drs appointments.  We are still waiting for a contrast MRI which will take place early next month.  The non contrast MRI showed some brain scarring and they therefore want a contrast.  He has started a low dose of anti seizure meds and thus far there have been no other seizures.  We have also practiced with him what to do if he feels like he might have a seizure as there are times when he is home alone.

What I didn't do on my vacation was work on beginning the repointing of our foundation. This was my hope but it was not to be.  But the foundation will still be there the next time I have a bit of time off!

Chet makes a plan!

 This past weekend was Easter weekend so it was light duty in the home improvement arena.  I got a new medicine cabinet for the upstairs bathroom and installed that.  I picked up a new vanity for that same bathroom, so I can install that when the downstairs one is someday finished. LOL I did some picture hanging, pulled some nails, kind of  kept things low key.  

Chet found getting rid of the old medicine cabinet rather heart wrenching. I had him help me pull it out and we looked at all the rust all over it.  Honestly there was so much we had covered it with duct tape  years ago. It was put in when I was 4 and i am in my 6th decade; this owes us nothing!  It helps him to  be part of taking the old thing out and he calmed doing that.

Later he came and asked me what was behind the walls in his bedroom.  I asked if he meant did it have insulation and he said yes.  I explained that there is no insulation in those walls, actually in any of our bedrooms.  There is no heat upstairs either but we are all used to that.  Chet then asked if I could someday "rip his walls apart and put in insulation."  LOL  Well, yes, i could, once the other projects I have going are done.  It would really only be two walls so it would be pretty straight forward, though getting the debris out of the second floor will be a pain in the you know what.

More than that though I was concerned over how Chet would handle mess in his space. And there would be mess.  I explained that I only can work on the weekends and it would take about 4 weekends for me to get the job done. You have to understand that Chet essentially lives in his room. He comes down and socializes at meal times and for occasional short bits during the day. But by and large, the man l ikes to stay in his room.  And he doesn't like mess and he doesn't like change.

I said I was willing to do the job but it would probably be late summer or early fall.  And that he needed to think this through carefully.  He nodded and wandered off.  Two hours later he was back.  He said he had thought it over and he thought we should really do this because his room is cold and this would make it more comfortable.  He had decided that while I am working in the day time that he could hang out in Elisabeth's former bedroom and he had checked to make sure there was tv access there and a place for him to sit comfortably.  In short, he was a man with a plan!

I can't begin to express how impressed I am by this. I will check in with him again in the late summer to make sure he still feels the same way but as it stands now, I will be taking his two north facing walls down to studs insulating and hanging new drywall.

Weekend Warrior Woman!

 This weekend I kicked it into high gear in the bathroom project.  I got almost all the wall demo done and also took up the old tile floor and the subflooring. 

This picture was courtesy of my wife, surprising me with a candid pic when I lease expected it.  But actually today what I wanted to write about was not what I was doing physically, but how I have worked to help this be tolerable for my son Chet. Chet has Aspergers.  He is very much a person who craves consistancy.  He has his evening shower (now bath) at the same time every night. He has a snack at the same time every day.  He takes the recycling out at the same time every day.  You get the gist of things.  The guy does.not.like.change.

And here we were planning the biggest change to our space that we have ever done.  I knew when we started this that I would have to use care to help Chet get through this.  Knock wood so far we have been melt down free.

I started explaining what we were thinking of doing way before we did it.  I explained that we talked to two companies and they could only do a portion of this work for between 10 and 13K  If we took this on ourselves and did it with minimal contractor input we would have a more functional, beautiful space when we were done and we would not probably pay 1/2 of those numbers in cost.  Chet is analytical so this helped.

I also took time every weekend to explain what I was going to focus on that day before I did it.  Even if I explained it the week before, I did it again.  I gave him 20 minutes to ask all the questions he wanted and then I would move him along so I could get working.  Chet will literally ask questions for hours if you don't put an end time on things.  He would check back in with me at snack time to see what I had done so far.  It helped keep the mystery out of thngs.  I have a pretty thick skin where Chet's concerned. I know that he does not mean to be hurtful.  His saying things like "what are you destroying now?" is not meant to hurt my feelings.  I just always explain that I am taking apart things that don't work for us so we can install things that do work for us.

For instance, I demoed a closet. I am going to build a new one there with better and more functional shelves and a sliding barn door that can have towel bars on it.  To Chet, the old closet was "perfectly fine" and i had to take the time to show him why it wasn't.  Explaining it calmly and quietly helped.

I had to alert him to noise.  I never start work before he has his breakfast and does his hygiene so tha the can get upstairs before I start banging.  If something is extra noisy like the tub removal, I warned him and I kept the bathroom door shut to try and minimize the sound. Chet is extremely sensitive to sound.

I have found ways that he can help.  I had him help me carry the pieces of the cast iron tub to our dumpster. I have had him hold doors open, or fetch tools.  Not a lot, just things here and there so he feels a part of the process. 

I have showed him the new components that I have purchased for installation. The new toilet has been vetted for energy efficiency. I showed him the insulation and explained why I bought this specific type of insulation instead of the fiberglass.  I showed him why having a new shower head with a detachable hand shower would be helpful.  He needed concrete examples which I had but it made it possible for him to feel we did not have to save our old showerhead.

In some ways, all of this is more exhausting than the labor of getting the bathroom down to studs. But he has stayed calm and that is really really huge. We are all looking forward to the completion of the job but if knowledge helps him deal with the inconveniences I am all for it.

The Reno train keeps moving along!

The renovation work has continued since Covid-19 still keeps us socially distanced from those we love and many of the things we do.  We find joy in working on and around the house.  This shot is of Chet washing siding. This is something he does well as long as I have the time to stand there with him.

Another big project has been painting all the white trim on the house.  It has been labor intensive--lots of scraping and prep is needed before the paint actually goes on.  A good paint job is 90 percent prep and when one is dealing with areas that have not been painted for many years this is especially true.  On the upside, it was a good reason to buy a small orbital hand sander for myself!  The trim looks fresh and crisp now. The only trim that remains I have to rent a big ladder for as it is under those windows at the very top in the picture above.

I have now also begun work on the porch interior.  That space you see in the picture will someday have screens that my wife and I want to make. Today I sanded the floor. It has been covered for 40 years by that fake grass stuff.  It is now sanded and it appears there is only one area that really requires some attention.  I think there is a rotted joist that we will have to sister a board to and then put a patch of new tongue and groove there.  Can you tell I amuse myself watching DIY youtube videos?

The floor will eventually be painted with gray enamel.  Then we will put an indoor outdoor area rug down and my wife will have a nearby little oasis when she has a few minutes to relax.

Home Inprovement with Chet

Another weekend in quarentine, another weekend of house projects.  Saturday the weather was damp and threatening most of the day. So the day of painting that I had planned could not happen.  However it was warm enough that Chet could start washing the siding of the house.  This is how we spent Saturday morning, he and I. He can't do the job without active supervision but if I am there to keep him focussed, he does very well and is always very proud of his efforts.  We got one and a half sides of the house washed and he got to stand on our new 6 foot step ladder (successfully with no forays to urgent care needed!) He was extra excited and proud of that.  Finding ways Chet can help without injuring himself or someone else is often a challenge.  This is a job that will keep him busy for a while as our house is really big.  We can't get up to the very top of our house but we can get way up past the average sight line and the lower areas are the areas with the most dust and dirt anyway!

Rain came in during the afternoon and prevented our Saturday fire pit gathering.  Actually we got in about 20 or 30 minutes before the rain came back and chased us inside.  Today K and I were able to start painting our front porch.  We have decided we don't like the way the columns came out and I went out and purchased a small orbital sander to take down the paint more on those and get a better smoother coverage.  We painted the walls on the inside of the front porch as well and those look good.  Tomorrow I will test out the sander and hopefully have a smoother surface for a more even coverage.  I am picky about things like that.  It is better to take the time and get the job done correctly.  

We also planted potatos and onions at our community garden plot.  And because summer should always have some silliness-even in times like this--we had ice cream for supper from one of the best local ice cream stands around.  You can't get cones and only one person can pick up the order and you can't eat (even outside) on the premises, but it was still fresh home made ice cream and sooooo delicious.

I thought I would be sanding the porch and hall floors this weekend but unless i have time to sand and paint after work that may be another week out. We shall see!

 

Mothers Day is Reno Day!

The DIY train keeps rolling along here at the 10 Green as my kids used to call our house when they were little.  The bathroom hallway got its coat of paint today now that all the old wallpaper (4 blessed layers of wallpaper!!!) has been removed. The seams have been caulked and the walls mudded and sanded smooth.  The paint is a creamy yellow and will brighten the space greatly.

Elisabeth's room is almost empty and ready for us to prime the walls today.  I had Elisabeth help me rip out the rug and padding and showed her how to remove tack strip.  I have a lot of the staples that used to hold down the padding removed but will need another evening of work to finish that up.  My wife primed the back wall.  This room has only one window so we didn't want to prime all the walls at once because the smell would overwhelm.  While I have no sense of smell a boat load of Kilz is good for a migraine so a slower pace is good for me too.

We stopped work about 12;30 and I picked up our Mothers Day meal from a local restaurant.  It was meat based so I ate sides but I knew my wife would love this meal and she did. The kids had cards and gifts and it was lovely.  I made a pineapple sunshine cake--which is kind of a cheater dessert to me as it uses a cake mix as a base but there was no flour in the store this shopping trip and I only have a 10 pound bag left here at home. (I realize that sounds like a lot of flour but we bake a LOT, especially in pandemic times.) So since there were cake mixes at the store I reverted to this old "recipe" that did not deplete my precious flour stock!

Later that night we went outside and had a fire in our fire pit.  It was chilly out and a perfect night for it.  Lots of chatter and laughter, only Chet would not come because we had no marshmallows.  That made a fire "pointless."  (laughing)  He has promised to come to the next fire when I am able to find marshmallows.  Understanding the realities of pandemic shopping in our area is hard for him.

We also called my mom and wished her happy mothers day.  All in all it was a lovely day and we feel very blessed.

It Happened and Chet Rocked it!

Who would have thought it?  I took a 2 WEEK VACATION!  The world did not end (though candidly I have had to go in early every day last week and likely next week in order to catch up!)  However, it was worth whatever extra work I need to do now.  We all had a fabulous time.

And the best thing?  The friends we went with had a blast too. There was zero squabbles.  There were 6 of their kids, and 4 of ours and everyone just got along. We shared a giant house with its own pool.  I was most worried about Chet as large groups can be over stimulating. And we were spending a lot of time in the Magical Place.  Theme parks also can be over stimulating.  However we brought sound reducing head phones for him to wear when things started to be too much for him.  He was resistant at first to employing them but eventually could see that they really do help.

I remain amazed at how accommodating D^sney is.  I brought documentation of Chet's status with us as I was concerned about his ability to maintain in a long line.  It turns out that there was a program whereby we could check in at a ride and be given a return time, allowing us to move elsewhere about the park, get a bite to eat, etc and then just return at the scheduled time.  Our friends have two children on the spectrum as well so we were all in the same boat and received the same accommodation.

I knew the other kids would have a blast and they did, in all the "typical" and expected ways.  It was also magical because Rob was able to be with us for the second week and I know that he hopes to move to the West Coast in the next year or two so this may be the last big family vacation with him. But watching Chet succeed at this, laughing and having a truly wonderful time--that is my great gift.  You need to understand that when he was little we could not even go to a small theme park (think Santas Village in NH or Story Land in NH) without horrible meltdowns.  I remember him biting me all the way to the car when he was about 8 because he was so overstimulated.   I remember being black and blue from being kicked.  Admittedly we did not have the correct diagnosis then, but the pain of not being able to share in a beloved parent/child experience was an emotional wound.  Now those memories will forever be outshone by two weeks of him laughing and having fun in ways I never knew he could.

First and Last Campout 2019

We left home to clear skies and lovely crisp temperatures on Friday.  This was a much anticipated camp out. Partly because in a strange confluence of events it was our ONLY camp out this year.  Partly because this camp out at a retreat center in Maine with friends from our church and a neighboring church is an important launch to the Religious Education year for my kids.

Chet had a hard time on the trip up.  He was more frenetic than is typical and Rob was unable to come with us.  That may have played a role in Chet's behavior because whenever you deviate from the expected routine, his behavior decompensates.

 Also, the retreat center has instituted some new policies.  Some of those meant that Chet could not assist as a "porter" carrying people's bags to their rooms and showing them the room locations.  However, I had prepared for this and reminded him over the past three weeks about how this had changed.  It was now a staff job etc.  So during the time he would typically help others, he and I played a variety of card games on the porch of the dining hall and watched the moon rise over the waters.

Thankfully we also took a long beach walk as a family as the weather was lovely on Friday.  (note foreshadowing for Saturday's weather!  LOL) We also looked for small to medium sized rocks oval and smoothed by the ocean.  My SIL is fighting breast cancer and she recently spoke with me about healing rocks at the center.  They are painted with images and sayings that make the visitors to the center feel loved and strong.  She had taken two and knew she had to replace them, as that is their policy. She does not do crafts and had offered to bring back her two rocks when she no longer needs them.  I offered to paint two rocks for her and she has chosen what they are to say.  I hope the goddess guides my hands as I am not the most clever of painters and this is important to me. 

We found a variety of rocks that we screen shot to her so she could choose the ones she likes.  We also wrote her a message in the sand and sent that to her.  Her prognosis is good but the road to health is going to be long and challenging.  Despite hearing "stage 1" it is still scary.  And due to family history and aspects of her cancer, she still has to have chemo and radiation.  She shaved her hair this Saturday and sent me pictures. We texted while I was at the camp out.  I hope it helped  and that she could feel my love and support even though I could not be with her that day.

Friday night was cold.  We definitely felt the icy fingers of Lady Autumn as we lay in our tents.  It was 45 degrees when we woke in the morning.  Thankfully I am a bit of a veteran to this camping gig and had packed well and warmly.  The kids had argued bitterly with me back at home when I was gathering warm things. I think on Saturday they realized that Ooma might still know a thing or two as we were more than prepared!  (laughing again)

The whole of Saturday was cold and rainy off and on.  There was a bit of beach walking and lots of game playing and talking.  You know, I could choose to be angry that my only camp out had cold temps or I could find happiness in time to read, and talk with friends and play games.  I chose the latter as did the kids.  Chet had lots of kids who wanted to play Magic the Gathering with him so he was set literally for the day.

Saturday night was the talent show and bonfire with singing and more conversation.  It was late when we got to bed but I woke early as usual and joined friends on the beach for a short yoga session.  My yoga has improved over the years.  My balance is still less than what i wish it was, but it is better than a year ago.  My new class, while not necessarily feeling like it physically challenges me, has taught me more flow of poses and a sense of searching for quiet inside myself.

Of course today, in the capricious way of things, the weather was warm sunny clear and lovely.  However we had also learned that KC's close friend just lost her dad very unexpectedly.  (car accident)  He was trying to support her long distance and feeling somewhat emotionally worn himself.  Rather than prolong our day, we broke camp and headed home.  I was missing my wife, and i also knew I had 8 loads of camping wash to do, the tent to set up again and dry when we got home etc.

And so, the rest of the day has been spent cleaning the equipment so it is ready for next year, doing laundry so the work week can start smoothly, and remembering the sound of the ocean when I lay in our tent these past two nights.  I will miss that perhaps the most I think.

It was the kind of camp out that left me feeling very connected to my network of church friends, and also very aware of the fact that fall is truly here.  I watched red leaves skitter across the sand as I walked the beach.  I saw brilliantly scarlet sumac and gorgeous golden rod.  There was no denying the wheel has turned!

Summer Frenzy

Well not a frenzy I guess. But definately not a lazy summer with camping get aways interspersed throughout.  Instead, this has been a summer devoted to house renovations.  We started with Chet's room.  If you have never done over the room for a man who likes everything to stay the same and believes that they should keep the receipt for every purchase they made since 2007 you have not lived!  (insert laughter and an eye roll here!)

Chet's room has not been done over since he moved into this room at 17.  He is 33.  The wall paper was curling, the trim paint was grungy and the room was chock full of stuff he did not use any more (not to mention the aforementionedoh so important receipts that were literally filling every.single.drawer. of his six drawer dresser.

Like all things for Chet I know this would be hard for him.  Change is evil to him.  Even if it winds up something that he likes in the end, the process is agonizing to him.  So I tried to make this as painfree as possible by having him help me sort things for 15 minutes at a time.  Literally 15 minutes, during which time I would channel my inner Kon Mari and ask him "does this give you joy?" as I held up the receipts. Initially there was a lot of bluster about how important they were.  I would ask him to share with me what was important about them  (all using the same low key voice) and eventually he would say he thought he needed them.)  Usually at that point I could suggest that if he did not *know* he needed it, then it would likely be safe to recycle it.  The first drawer there was lots of yelling on his part.  The second drawer there was some yelling and some tears of frustration.  By drawer 3 he was beginning to embrace the declutter.  By drawer 6 he actually laughed about some of the things he had felt were so important to keep.

Of course if it was only the desk it would have been easy. But I also had to convince him that the pile of old underwear in the bottom of his closet did NOT need to be saved and mended for future use.  Trust me, there are street people whose undies had more fabric left to them than those did!  He has good clothes, he just genuinely believes he has to fix mend and staple together everything and keep using it.

I had him help me box his actual belongings and we stored them in my room.  We did some editing aas we went.  With some discussion he decided that the Harry Potter mylar baloon from his 13th birthday was no longer necessary to keep.  And there were other edits of a similar nature.  With the room emptied of all but a bed, and a dresser it was so much bigger feeling.  I think that might have actually been the sea change moment for him, though I would dearly love to say that it was all my gentle and consistant parenting through this process.

He LOVED how big his room felt.  Also as the walls had to be stripped of all the old paper, mudded primed, and the trim painted and a small ceiling repair done, it was sort of empty for a while.  I think I hit the autism lottery for that as it gave him time to really get used to it feeling more open and airy. 

The top of his walls are painted a dusky rose that he chose. Chet loves pink and this is a pretty shade.  The panelling on the bottom is painted a medium gray. He likes to make cards and I helped him organize all those supplies (previously hidden under all the receipts) into clear bins and they fit on a shelf in his closet.  We painted a cabinet to coordinate and put a cork board on one side so he can put receipts there for the short time and then because they are visible, I'll see them and can help him edit more regularly. 

He has a collection of colored mini carabiners that he wanted to make jewelry out of. That didn't work when he tried it but he wanted to keep the carabiners.  My talented wife figured out how to use them to hold up a curtain on one of his windows.  He got new curtains, we put new wood cladding on his two stairs in his room and convinced him he only needed one set of shelves.  We gave away the desk as it really would have just become a catch all of horrors again and I could not face that.  So using how much he loved the open feeling we got him to agree to getting rid of that and putting a small desk with only one drawer in his room to mount his TV on.  He also got a cute little leather chair to sit in and new mini lights (those ones on wires that hte kids love) to put around his room.

He helped put the art work back in his room but I guided him a bit so that things were not just shoved every which way.  There is more of a feeling of calmness with it like this and I have honestly seen him act more calmly overall since the re-do.

I can tell he loves his space.  I felt bad at times putting him through the stress of the renovation. And sometimes, truthfully I felt bad putting myself through it.  It can feel a little thankless when you are trying to do something nice and someone is acting like you are torturing them.  But at the end of the  

day, he survived, and he is proud of the new look and his space. 

Happy Birthday Rob June 2nd

Rob turned 22 yesterday.  It is hard to wrap my mind around that. The mom in me remembers the dinosaur themed birthday.  The year we had the bowling party with his friends.  The skateboard party and on and on. . But years have rolled by with increasing speed and he is a man now. And a good man.  No one is perfect and he certainly isn't but at the core, he is a just so good.  He is loving and caring.  Never will he be one for lots of words, but he is there showing his caring by the way he acts.  He's the kind of guy who gets his girl flowers just because.  Or who choses to make supper on a night he knows I have had a tough day.  Or who buys his brother and sister cool kicks because mean mom caps out the shoe budget at what I believe is a reasonable figure for growing feet! He is beloved by his siblings and we were all together to celebrate his day.  We had a lunch out at a restaurant of his choice and the meal was filled with lots of laughter and smiles and silliness.  (That is KC cracking up in one of the pictues and Fiona and Chet are laughing in a couple others.)  Lissa considers herself far too cool to giggle with abandon if there is a camera around!  It was special to be able to celebrate with Fiona here.

She and Lissa had a manicure first and Fi got her ears pierced after that.  So the lady folks were  all stylin by the time it came to lunch out to celebrate their brother.  After lunch we went home and had cake and gifts which left him a large part of the late afternoon and the evening to go and hang out with his friends.  Late that night he and his friends returned to our house for a campfire in the back yard.

The years have also woven birth and adoptive families together.  I always tag his first mother in the photos as well as the other first family members that I know.  I am friends (both IRL and via the internet with many of he and Fiona's first family but not all.) Those that I know continue the tagging of photos spreading news out to those in other states who want to know this child we share has grown, has thrived and is ready and eager to embrace all the world offers.

I feel lucky every time that we can celebrate with Rob.  I know that there are probably a finite number of such celebrations left to us.  He is fledging slowly but surely and is increasingly less consistantly available.  He has a wide circle of friends. He is a hard worker and I know in my heart that there will (and indeed, should) come a time when he will decide to take an apartment with a friend.  Someday birthday congratulations will be by computer and telephone so every moment we are able to celebrate together is precious to us all.  Happy birthday son.  Remember always that you are a most precious gift to your family and the world.

Chet turns 30!

Today is Chet's birthday and my perpetual teen turns (gasp) 30.  Yes, the big 3-0!  It is hard to wrap the mind around, in part because he is always so young in his behaviors.  And I have come to a place where I am really okay with that.  The luck of having a large family has been that there have been for many years youngers coming along who reach that place where Chet is comfortable emotionally.  It is a place typically inhabited by pre-teen or early teen boys who enjoy fart jokes and belching and the game Magic.

Rob has sort of passed through that stage and moved on towards young adulthood.  But KC and Lissa are filling the void.  They have learned Magic this summer and enjoy playing it with their big brother. Chet for his part, enjoys the chance to impart something he knows to them.  Albeit somewhat pedantically, but they are used to that as well!

What will happen for him when these two grow past where he is comfortable being I am unsure.  I may have to put an ad out for pre teen boys who want to gather at my house for fart jokes, pizza and games of Magic!

But for today, we celebrated all that is Chet!  He got his favorite supper of arroz con gandules, home made cake and of course gifts.  He asked for rubber bands, a note book and pens, and a couple of movies. He got those and warm fleece pants for winter and hair dye so his mohawk can again be the pink of his shirt in the picture above.

My wife had to leave for work so we did the party backwards with cake and gifts first and then the meal.  This was perfect for her schedule but also consummately suited Chet!

Happy Birthday Son!

A shopping we will go!

Today was a busy day getting ready for Yule.  I took my Chet shopping.  I don't love to shop anyway, I love to shop with Chet even less!  LOL  However we soldiered through and I tried to find stores that were less stimulating for him so he could hold it together longer. This meant avoiding the big mall in our city and hitting outlying stores.  It was mentally exhausting keeping him focussed and calm but we did get through  it and his personal stress is also greatly alleviated by having his purchasing done.  He cares deeply that people get something they really want, it is just the process of getting that and understanding what people want that is hard.

Chet wants things like scotch tape.  A small personal sized bottle of maple syrup, and envelopes.  Oh and air filters for his air cleaner in his room.  (he has plenty but likes to ask for these yearly)  So due to the simplicity of that which gives him joy it is hard for him to grasp what gives OTHERS joy.  As in, "No Chet mom would not want a 12 pack of razors or coupons for her cereal."  Then there was the fact that Rob told Chet he'd like an argyle sweater.  However we could not find an argyle in the stores.  Well, we did but it was button down and I know that is not what Rob wanted.  Rob is flexible and i know his style choices.  I could find zillions of other sweaters that he would like.  Chet, being Chet was fixated on: It.Is.Not.Argyle.  6 stores later I convinced him to choose between two very nice non argyle sweaters.  We got home and I hissed to Rob "argyle?  REALLY?" which made him crack up.

Chet makes a lot of cards for family and friends each Christmas season. He brought a ton to deliver at church today.  I have yet to convince him that you don't write "Dear John Smith" inside the card when you are wishing a friend Merry Christmas.  Thankfully, people love the cards and see the caring behind his actions.  I am grateful beyond words for this.

My shopping has been going well.  Small peeps are done except for stockings.  I have found two really unusual handmade gifts for my wife that I hope she will love.  She is notoriously hard to buy for but these are unique and I think fit her personality to a T.

Ferry Beach

We are back from our final "camping" weekend. Actually it is a gathering of our church and another sister church that happens annually.  One can rent dorm rooms but that would be pricey for our family. Tent sites are MUCH more affordable and also allow Chet to have a place and space that he can decompress in.  This is important.  The sounds of dorm life are minimal to those of us who are neuro typical. To my eldest son, it is a cacophany and he can't tune it out or turn it off.

It was chilly, And yes, it rained, making all but one of our campouts have rain at some point.  Kind of a weird record but there you go!  Still, it was a lot of fun. It was very relaxing to me because there is not a lick of cooking or cleaning that one does while at this event. Zero.  I repeat, ZERO!

The kids have a zillion friends, as do I. And they were all off doing their things while I chatted with mine.  We had a family beach walk when we first got there, but other than that, mostly everyone did their own thing.

I love to talk with people.  What inspires people, what upsets people, what makes them tick--it is all interesting to me.  So I did a lot of talking and even more listening.  I also had a lot of time to read. I brought my kindle and had more uninterupted reading time than I have had in years.

I helped provide supplies for the Saturday night bonfire--that was fun.  The weather was not warm enough for swimming but it was great for kite flying, playing on the beach, finding ducks looking for their dinners and more.

Saturday night is also the talent show.  KC played a piece he wrote himself.  Lissa did a gymnastics routine she worked out with her BFF.  Rob was his usual easy going self, hanging out with teens and adults alike.

But the star of this weekend was my Chet.  And I am beyond thrilled.  Chet's actual presence there was in jeopardy a few weeks back as his behaviors were wildly out of control.  I don't know why.  Sometimes I know a trigger but not always.  However we had a long serious talk and made a specific action plan of what he needed to change in order to come to Ferry Beach.

I was worried.  Often when he wants something the most is when he shoots himself in the foot with poor behavior choices. But this time, he pulled it together and came with us.  He did well at the restaurant we had supper in on Friday night.  He was relatively calm during the set up of our campsite.

He loves to be "bell hop" for the church members and friends who arrive through out the evening.  He knows the room assignments and helps people unload and get to their room.  He has done this for years and folks really look forward to it.  This year he also took on a role in the dining hall, bussing dishes for people and helping to wipe down the tables.

His efforts were noticed and the weekend coordinators asked me if they should get him a gift card or something to thank him.  I said no, that for Chet being able to be there, and to contribute in a postive way was also a gift for him.  He gets great emotional value from the experience and did not need a gift card.  Instead, they asked him to stand after breakfast and gave him a formal thank you and a round of applause from the 100 or so people there.  He glowed, and I gave thanks.

So many times in Chet's life, I have to explain.  Explain that he didn't mean to be rude, or that he has challenges understanding personal space. Explain the unusual facial tics that sometimes happen when he is stressed. Explain the fact that he doesn't get social cues and know when to end a conversation or a topic.

But this weekend, I didn't have to do any of those things.  Most of the people there have known Chet for a long time.  This helps them to see beyond the quirks so to speak and see the giving nature that is very much a part of his personality. This is a gift I will remember for a long, long time.

Just Beachy!

Weather wise this has been an odd summer.  Not a lot of weather that was conducive to visiting the beach--at least on the weekends, when I am not working and can bring the family.  Fiona was supposed to visit this weekend but the house said they did not recieve either of my 2 emails so they could not accommodate.  I am going up to thehouse tomorrow to spend some time with Fi and to help her do some sorting and hopefully organizing of her room.  It is unacceptable to me that we don't have time to see each other.

This meant though that today was free for the beach--I would not have gone if Fiona was with us as the ocean frightens her.  We went shopping early and set off by 8:30 for the trek.  A bit under an hour later we were there.  The sky was that perfect cerulean blue that I associate with high summer.  The temperaturse were perfect so that you could warm up after being in the water but not burn your feet on the sands.  Truly it doesn't get better for the beach in New England.  I only took a couple of shots as K had to stay home.  If I am watching 4 kids at the ocean, I spend very little time looking through a lens and a LOT Of time in the water making sure all are safe and having fun.  I snapped these during our lunch break.

I have always said that everyone blooms when they are ready.  Today was Chet's day to bloom.  Chet loves the ocean but is over stimulated by it. The first part of the day was spent helping him acclimate.  When Chet gets wound up, even in siuations he likes.  When the sound of the waves, the feel of the water and sand, the birds, etc combine, it is hard for him to regulate his responses.  He begins to talk incessantly, to forget to swallow and start to drool, wave his arms around and lose a sense of personal space.  For the most part in a situation like the beach I can help him through it.  But it takes time.  That can be hard on the other kids--particularly KC who is profoundly upset when he never gets a turn to talk, or when Chet begins to drool.  But we got through it.

And then something amazing happened!  Chet was able to learn how to boogie board.  We have tried to help him with this for years to no avail.  He would wind up using the board to slap the waves, but never get the concept of lying on it and riding the waves in.  Yesterday--it connected and he successfully rode.  And then did so over and over for several hours. This also allowed him to "hang out" as he put it with the other boogie board folks and he did so with appropriate actions to boot.

We finished the day at our favorite ice cream stand on the way home, sandy tired, and full of joy.

Well Seasoned

There are many wonderful things about being what I call a "seasoned" parent.  One is that I think there is a huge shift in my personal perspective from when I was the young parent of a child with special needs.  Also, Chet was our only child and I think perhaps that factors in as well.    I had not adopted again because his needs consumed so much of our attention that I felt it would be unfair to any other child at that point; the world through his lens of disability was my only view for many years.

I watched friends with neurotypical kids cheer at soccer games.  I watched them plan family gatherings and attend things like fireworks or parades or theme parks.  These things, when we tried them, usually ended in disaster as the event would become so overwhelming to my son that he would behave in ways that were harmful to himself or to me, or disruptive to others.

In some ways, my world shrunk.  Play dates were virtually non existant. He was not invited to parties and did not want to join clubs.  We carved out a new path.  He took swim classes and volunteered at a wildlife sanctuary. We camped and hiked.
 Family gatherings were small and made manageable to him by routine and brevity.  I had tried support groups and found they didn't meet my need.  I found they were filled with weary frustrated people who just wanted to complain.  I didn't want to complain.  I wanted companionship because I am intensely social by nature. I was told often that I should lead a workshop. I didn't want to do that either--at that point I was still trying to make public school life viable for him and I was doing enough advocating and educating there.  My well was nigh onto empty.

But years passed. And either I have shifted, or society has.  I am still a parent of a disabled child who is now a young adult.  Actually, that has changed to being a parent of 2 disabled young adults. But I am also a parent to 3 typical kids.  They have play dates and parties. They love fireworks--like what we went to last night, dance classes and more.

For KC, last nights city fireworks event was a "date" with his girl friend.  She and her family of 5 met us at the venue, a large local park.  We spread our blankets out together and her mom and I began chatting.  We have much in common, from our large families to our sociability.  She told me that she had invited her sister who has an autistic son to join us all.  Her sister was neat, her son was fun, though they had to leave before the fireworks because he was afraid the noise would bother him.  Rob's friend J met us there. He too is developmentally different.  

My point is that we all meshed together and had fun.  We all talked together, blew bubbles, played with light sticks, and played a very whacky game of Hot Potato.  Differences faded.  I suspect society is a bit different now. More is known about spectrum disorders and that helps a lot.  But I suspect a lot of it is that I view things differently as well.  I don't feel that I need to apologize.  I rarely feel embarrassed. This is just the family that we are. And we love each other.

Hello Autism!

It has been a wild day.  Rob was needing to be at church early as the Youth Group were doing the service. So we had to leave our city by 8:30 to be there for 9:00 a.m.  No worries, I got the tribe up, breakfasted and out the door.  I did notice that Chet declined his customary donut from Dunkins but I figured it was because we left significantly earlier than usual.

We got to church and I engaged the youngers in a game of Yahtzee to pass the time.  Chet began opening windows in the sanctuary, saying it was stuffy in there.  I checked with someone else (because I am pretty much always cold) and they agreed, so we left the fresh breezes coming in.

Service began. I sit up front with KC and Lissa. Rob sat with the youth group. Chet always sits in the back in a specific chair that is most comfortable for him.  Part way through the service I am suddenly summoned out of the sanctuary.  Chet had felt dizzy, gone to the bathroom, been ill and then wound up on the floor. When I arrived he was in the lounge, seated. He admitted to me that he had a headache.

The challenge of Chet's autism is that he is perpetually out of touch with his body.  Most of the time he does not notice pain till it reaches a level of crisis and has rendered him nauseous.  There are also other times when a paper cut will cause him to be in paroxyisms of pain but for the most part, it is the former scenario that plays out here.  The down side of this is that if the headache has reached that state there is nothing that I can do. I can't give him any med as he can not hold it down.

So there I am at church, with Rob scheduled to play on the piano and the littles in their classes and Chet, on the couch in the lounge.  I reassured the folks at church that this scenario is not frequent, but not uncommon either.  Chet is a man of extremes. Feeling slightly dizzy will cause him to lay down on the ground spread eagled.  This is not a sign we need to call 911. (smile)

I sat with him till service was over and then walked him to our car, rounded up everyone else and beat feat home.  As expected, he fell asleep in his bed and woke 1 1/2 hours later refreshed and ready to eat.  I hate that his autism blocks his ability to reach out for help when it could solve something.  I am grateful for friends at church who handled this all with considerable kindness and grace.

There are days when living with autism is harder than others.  The past couple days have been that way.  Chet lives and dies by a schedule.  It is carved.in.stone.  Waking up late is an anathema to him. Changing closets seasonally requires days of prep before we can actually do it. Changing things in general  causes anxiety which manifests itself in anger, frustration, loud voices and flapping.  All in all, not pretty.

We do not have heat in our upstairs where the bedrooms are.  We tried putting heat in Chet's room a couple  years ago.  He is most content when he can spend a lot of time in his room so we wanted him to be safe and comfortable.  Unfortunately, he hated the heat.  (well fortunately I guess for billing purposes)  After two years of trying to get him to keep the heat on and having him argue about it, we had the heat disconnected. I don't dare try an electric space heater as an alternative  as he keeps so much paper in his room and is unlikely to notice things being too close to a heat source.

This is fine most of the time.  The exception is when we have sub zero cold snaps like we are experiencing now.  Then it is not safe for him to stay in his room for long periods of time except for sleeping.  He refuses to cover up in a blanket or throw in the daytime, so he tends to sit in one spot and become chilled.

We have had him spend the majority of the day in our living room with the pellet stove where it is, at least for our home, relatively toasty.  He has been agitated by this.  He is fine once he settles in there, but first there is a lot of angst.  Loud, argumentative, angst.  I know his schedule and routine are how he feels he controls a world that often feels out of control to him.  But hypothermia  is not a solution!

Tomorrow is supposed to be warmer.  Thank you goddess!

My Solstice Gift

Last night, I had a solstice gift. To understand how cool this way, you have to understand that life for Chet is very "orderly."  Regimented and not likely to change would be more accurate, but orderly sounds better. For instance, he has to eat at the same time.  He literally can not tolerate a deviation of more than 15 minutes.  Offering snacks is not a solution.  Last night my wife and Rob were late coming home from a cleaning gig and supper could not be served till 5:00.  I fed Chet at his usual time and he was content to eat with just my puttering in the kitchen for company.  Every night when he comes down to supper he brings his PJ's and towel. He takes his shower right after supper.  It does not matter if the Pope stopped in to visit.  Chet will have his shower at his designated time and walk past and happily wave good night.

His emotions are prone to spinning out of control and so the things in his life that he can control, he has always done with a fierce intensity.  By acceding to this need, he ihas become slightly  less frantic about it. But it means that by 5:30 or so, he is in his room for the night and not seen again till morning.  I get that he needs this.  Nights have always been harder for him. For some reason he has always been prone to ramping up  then and is dramatically more sensitive to stimuli of any form.

But last night, out of the blue, he came downstairs about 5:30 with a deck of cards.  He wanted to know if the rest of the kids wanted to play Uno.  They were thrilled and in moments, while I did the dishes, there were 4 kids by the Yule tree playiing Uno.  It was truly a solstice miracle for me. I listened to the laughter and my heart was light.

Sunday Service

I really love our church.  Today's lay led service was on "dis" abilities.  My Chet was asked if he would usher and he was so proud to take the collection.  He also takes charge of the collections for the food pantry each week. He has a giving heart though it is sometimes hard to tell because of his manner of expressing himself.  Someone posted an article recently about how autistic people don't not  feel, if anything they feel too much. I have often thought that very sentiment about Chet. It is easier for him to show compasssion to a cause, or a wider group than to interact individually because the latter is so much more intense and overwhelms him.

The stories shared by folks who have a variety of challenges in their lives were compelling.  One person in particular shared a mental health diagnosis, that I would wager many of us did not have a clue about.  I thanked her afterwards.  Sure takes guts to get up there and say those things.   It is also a testament to our faith community that people feel safe enough to do that.

I also have a passionate concern for folks whose dx is not obvious.  Folks who are blind, folks with other physical impairments have a tough road to hoe and I am not saying at all that it is easy. But it is more obvious and so I think that to some extent there are more helps offered.  To have a 'hidden" disability--mental illness for instance, or my Chet's aspergers, does not always engender supportive comments.  Because from a distance it all looks like something else.  Maybe bad parenting, maybe teen rudeness (though he is 28 he is often mistaken for a teen).  I have found myself in public having to explain that my son   is autistic, and it breaks my heart.  I feel like I should not have to advertise his disability.  I don't want him to ever think that I see him as "Aspergers" instead of as Chet, the babe I held at JFK airport, my eldest, my smart, exasperating, funny, challenging man-child.   He is those things and more to me.  Aspergers is waaaaaay down the list.  Yet to get services, to get supports, I have to make it the top of the list.  It is a weird place to be sometimes. But to be in that place in a company of supportive others, that makes it easier.

Chet's hair

I am pretty easy going about most things. I don't have extremely high expectations regarding clothing and fashion.  I expect cleanliness and I expect that nothing one wears will have rude language on it. Private parts will be covered.   Other than that, I am pretty open.

So it astonishes me that I have been quietly going batty over Chet's hair.  Part of it is that Chet is 28 now and although I know intellectually and emotionally he is not 28, I don't want him to look, well, weird.  And weird is the order of the day for him.  His first goal was to try and grow his hair so that he could put it into what he called a Chinese top knot on his head.  The fact that he is not Chinese did not disuade him.  Nor did the fact that none of the Asian men (or women for that matter) that we know do not wear top knots.

However he thankfully decided it was going to take too long to invest time and energy in torturing the parents  this particular fashion statement, and moved on.  The new look involved him parting his hair exactly dead center and oiling down the longish bangs so that everything lay flat and sort of tucked behind his ears.  It was quite the look.  I thought he reminded me of Squiggy on Laverne and Shirley. Then I googled and found out Squiggy looked odd but did not wear his hair like that.

The other problem is that Chet decided that he had to totally wet his hair to achieve this style.  Also he decided that one should style your hair like this after your evening shower. It is starting to get cold in New England.  He can't really walk around with saturated oily hair like this as the seasons turn. The rest of the time, his hair kind of stood up all over his head. Like I said, it has been interesting to say the least.  (I should back up and say that he has been astonishingly resistant to having his hair cut)

Tonight I was talking with him about this and i asked him what he liked  about wearing his hair in this manner. He said that it kept his hair out of his eyes which annoyed him.  I took a breath.  And another.  THIS was the motivation for the style? "What if" I offered gingerly, "I trimmed the hair" (totally avoiding the word hair CUT) with a side part but kept the bangs short enough to stay out of his eyes.

He didn't say no and he didn't say yes, so I steam rolled ahead and suggested we try it and see if he liked it.  I guess that could have ended in disaster.  He is hyper sensitive to sounds and smells so he has never been one to do well at a salon or a barber shop.  And truly, knowing how little he can filter, I can not see him comfortable there,. It would be a painful cacophony of sight and smell and sound.

My wife used to trim his hair but for some reason he did not want her to do it.  But I was a novelty, and moving along too quickly (using my quiet but happy voice) for him to decide to dig in his heels.  He sat relatively quietly in the bathroom and I trimmed the hair.  I was petrified. I have zero barbering skills.  I can't even trim my own bangs. But his hair has a natural wave which is forgiving of less than perfect cutting and at the end of the session it looked SO much better.  Best of all, Chet likes it too.

The kids all complimented him without any cueing or dirty looks on my part. Absolutely a success!