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!

 

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.

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. 

Love your children well

My feed has been flooded lately with stories on the tragedy of the Hart family car crash.  Or maybe I should say the Hart family murder/suicides? I can't wrap my head around any  of it.  Adoptees and former foster youth are rightly outraged.  6 beautiful children dead.  People try to explain it.  People I know and respect in the adoption community are highly polarized about this. So let me just say for the record that in my opinion there is no way that what happened can be logically explained.  It was cruel.  It was horrible.  Six innocent lives were lost. Adoptive parents should be outraged and angry. They should not be trying to justify what happened by the real or imagined challenges of parenting the children.

It does not matter to me if the kids had "issues."  They were still children these two women chose to adopt.  How twisted people like that were allowed to adopt baffles me.  I guess I ironically always thought that becoming an adoptive parent gave me a leg up on some parenting issues.  Not all of them obviously.

I didn't know nearly enough about the mental health issues that challenge my eldest.daughter.  I didn't know anything about aspergers and autism and how they would shape my Chet's views of the world and his interactions.  I didn't know nearly enough about institutional racism until I became a parent of black and asian indian children.

But that didn't mean I was unprepared for everything.  I remember all those homestudy meetings.  They were filled with hard questions that I really took time to wrestle with.  No one comes from a perfect background.  I spent a lot of time thinking about my childhood and what I would want to bring to my kids experiences and why I felt some things should not be replicated.  We talked about how Kirsty and I felt about key parenting issues--schooling, consequences for actions, and so much more. We talked about racism, parenting a child of trauma, disabilities.

Did I still have a lot more to learn?  Abso-freaking-lutely!  But I felt like I had spent so much time working on the basics that when the less usual stuff came up--mental health issues, behavioral challenges, I could focus on needs and solutions to those problems.  I wasn't juggling say autistic perserverations and whether or not I believed in swatting my kid on the tush. (for the record, I don't)
I kept reading, I kept reaching out, I kept connected with people who would understand what my kids need.  Note that I didn't say what I need.  Because taking care of my needs?  That should not be my big focus as a parent.  I see it as a continuim.  When my wife and I first got together we had lots of time to focus just on us. From 18 to 27 or so we were all about us. We deepened our bonds to each other. We had spontaneous weekend getaways, we made couples memories.

Then we adopted Chet and our lives changed.  Everyones lives change when they bring a child home.  Yes, ours changed more intensely given his diagnosis.   When he became a teen and his needs were less intense and we knew we had love and energies to offer other children we adopted again, several more times.  In each case, we gave each child who entered our family time to settle in.  We reflected and had lots of conversation before each adoption. We made sure we were still both on the same page. (for the record, I personally wanted to adopt once more when my wife said no. I respected her wish.  Knowing your own limits, what works for you as a parent, that is needed for everyone bio or adoptive.) It was never about having the most kids on the block (though we probably do) It was about how deeply we love children and parenting and kids that needed both of those things.

There have been wonderful times and hard times.  I wouldn't trade any of them.  And I am grateful every single day for the gift of family and my children.  As the years race by--KC will be 14 in mere days, Lissa is 11, I know that in not that many years it will likely be just me and my wife and Chet. The wheel will have turned again.

Hold your children close.  Remember the gift that they are, always.

Why I am glad I didn't jump to conclusions

So last week Rob had to go into the Big City to get his transportation pass  for school. While he was there he planned on seeing his skateboard buddy that he met a college last year and also his brother D and sister K.  I was over the moon happy that the 3 sibs were getting together.  Sometimes  I have felt like I was maybe pushing Rob too hard in my efforts to maintain connections with his first family.  He didn't seem particularly to want this but he didn't come out and say he didn't want it either. So I kept on.  I have been Facebook friends with as many family as I could safely and reasonably connect with.  It has been a long, many years journey with lots of rough patches. But I think we navigated the journey pretty well.

Last year when D and A had their baby shower, we were all there.  More fences were mended, more bridges strengthened.  So it was totally in character for me to write a happy little post on Facebook saying how happy I was that Rob was in town spending time with D and K that day.

Today I got a private message from D saying that he and K did not appreciate being tagged in my happy little post and that although I considered Rob my son, they were siblings and were trying to rebuild that relationship in a way that was not over the top for Rob.

I wrote back right away that I absolutely respect their sibling ties and never intended my words to make that relationship difficult or undermining in any way. I promised not to write anything in the future and said that I would apologize to Rob as well if he was upset by my words--though I also said that he is pretty used to my bragging on him and all the other kids.  I am just a pretty open person.  What you see/read/here is what you get. Anyway, I wrote a careful and thoughtful post back and hoped for the best.

When I got home I had another post from D.  He said above all he did not want me to think I had anything to apologize over. He and K just wanted to be with their brother without all the rest of the first family asking why they had not been included and why they had not brought Rob by etc.  Which made total sense and was something that (obviously) had not occured to me at all.  So we have talked more on line and he and K are hoping to come out this way and visit as well.  I am excited. I am also mindful that if my response had been different, the outcome could have well been really sad.  Instead, I am filled with hope that the journey continues and that these kids solidify their relationships with each other.

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!

Reflections

I have been thinking lately on the relationships between parents and kids.  I somewhat obsessively check in on my own relationship with my kids.  I don't want to become distant, or self absorbed, or find myself trying to mold them into my vision of what they would/should/could be.

I am lucky as I learned to let go of the molding thing with Chet.  This is a gift from my differently abled child who could not be like neurotypical kids.  There was grief for me. A lot of it. Some of my grief was for me the parent. For the things we could not help him to experience. For the opportunities and milestones that he would miss.  For the things we could not even do together as a family because it overwhelmed him.

Some of my grief was for him.  He was and is aware enough to know what he was missing.  He knows he never went to prom. He knows he can not drive a car.  He knows that he has been unable to maintain a job. I have learned to  point his strengths out to him when he is down on himself.  To remind him of his cheerfulness to all, to remind him that his helpful nature is noticed and that he is loved.

And that has taught me to let go of my grief and my expectations and to focus on the positive more.  There are many challenging times, don't get me wrong.  It is particularly challenging that there is never an issue that is "solved"  If it is a non NT behavior response it will return.  You can count on it.  Parenting Chet is sometimes like that movie Groundhog Day.  Lots of do-overs whether you want them or not.

But that has taught me something else. To enjoy other people's  kids the same way.  I have friends right now who are struggling because they have a set of expectations for one of their children that the child can not achieve.  The child's apparent unwillingness is I think not something the child can control. There is a deeper issue there and I see in the child, many aspects of my Chet.  But you don't walk up to someone and say "gee I think your kid is on the spectrum." I would have clocked anyone who did that to me!

So I just said how much we enjoy their child's presence in our home (true) and that they are welcome here anytime.  The parents said they might take us up on that as there are "more bad days than good lately".  My house is different, with a structure born of different  cognitive processing being front and center in our lives. If this works for them, and gives a chance to breathe and re-group, I am happy to do that.

On the Catwalk

I wish I knew why this picture is sideways. It is vertical when I look at it in my picture file but this is what Blogger apparently does to it when I select it.  I suppose that in a weird way it is appropriate for the pic to be slightly off.  This is my Chet, modeling an African dashiki that a friend sent to us.  To say he loves it would be the understatement of the century.  He had absolutely the best time having his picture taken for this post.  Usually photos are so hard for him.  The very mention of it makes him grimace in what he thinks is a smile and you watch his body become more progressively rigid and tense.

The symbol of autism awareness is a puzzle piece.  It is a perfect symbol as it is truly a puzzle.  Not just the "what" of autism, or dealing with the behaviors, but sometimes just trying to understand the thought process, or figuring out what a trigger was, so that a situation can be more manageable the next time. It is baffling often, exhausting many times, and I worry for Chet's future frequently.

For some reason, wearing the dashiki was magical.  He was mugging for the camera and posing in ways I have never seen him do.

Here is another!  I love this.  I love how happy he is and that for this  moment in time, his essence and spirit could shine unfettered.

Festival Fun!

Yesterday we went to the Life is Good festival in a fairly far away location.  The festival is the charitable side arm of the Tshirt company of the same name.  I went for a few reasons.  First off, one of the many musical acts was The Fresh Beat Band who are beloved by 3 of my 4 kids at home.  Secondly, I had the opportunity to hear the young owner of Life is Good speak at an event I attended for work and I found him to be enthusiastic and inspiring.  I want my kids to believe they can make a difference and when you see a young person doing that and having fun doing that, it is a really beautiful thing. 100 per cent of the festival profits go to help children whose lives have been touched by trauma, whether that is through illness or violence.

There were reasons I could have opted out.  The tickets were pretty expensive.  I did not know how to get there and hate to drive long distances because of my headaches. I knew managing Chet's autistic issues in a venue of that size would be um, challenging.  But we went. and it was amazing and worth it.

Because we arrived early in the day, the kids actually got to see the Life Is Good owner Jacob and his brother who were making the rounds of the vendor tents.  I thought Rob's jaw was going to scrape the ground when he saw a guy dressed uber casually in cargo shorts, t shirt and cool hat and learned who he was.  Jacob always dresses like that, that is the same way he looked when he spoke to thousands of housing industry folks too. LOL

The festival has a tremendous green effort too with recycling, composting and trash bins all located everywhere around the venue. Volunteers were stationed there to make sure that the correct receptacle was used.  My Chet was ecstatic to see this as environmental awareness is his passion.

The music was great and we saw the band the kids love so much.  This part was hard for Chet as the music, which is really a cacophany of noise to him as he can not filter out crowds, music and other background noise began to overwhelm him.  First his head goes from side to side.  (When he was little he would stand in a doorway and do that and bang it on either side of the door casings till we intervened.) Next his whole body would begin to kind of jerk back and forth.  We were way in the back which was not optimal viewing but what I knew was the only way he could handle this.  The set was only an hour which was just about his outer limits for holding it together and then we began to walk the grounds. We could enjoy other musical acts as we walked around.  Mellow jazz strains filtered through the afternoon at one point and Rob recognized the artist as someone his piano teacher really enjoys.

There were games to play, face painting, an obstacle course and much much more.We had to leave by 3 because the littles were really tired and we had a long drive home and had to get back and let our poor pooch out.  (K was at work all day)  Truly, Life is Good!!

A Caring Faith Community

Claudia at http://www.fletcherclan.blogspot.com/ wrote a post a few days ago asking people what their experiences had been finding a faith community that embraced their family.  The reason was that many adoptive families find that the behaviors of their traumatized children are misunderstood  by others, or anger others, and the adoptive parents become marginalized in their church community and often flat out unwelcome.

When Chet was young we belonged to a small church in our community. It is the church I pretty much grew up in.  My grandparents went to that church.  My grandmother and my mother served as directors of the children's programming.  My father was on the search committee that called a new minister when I was in my teens.  I too was heavily involved as a young parent.  I was in charge of the children's programming with my wife.  I was the chair of the parish committee. I served on many other committees.  And when Chet was a young  pre-teen, I left.

I left because I was tired.  I was tired of my child being held to an essentially higher and unattainable standard because I was so involved in the church. I was tired of worrying--of trying to guess what each trigger would be and prevent it or manage it so that Chet did not draw negative attention to himself.  I was tired of my child being labelled.  I actually worked with a minister  there who introduced me to a new family as the "parent of the little ADHD boy from India."  Chet had so much more than ADHD going on I suppose I should be grateful.  Instead I went home and cried.  THAT was how he saw my son?  He did not see the enthusiasm with which he worked packing food each month as part of the SHARE program?  He did not see his happy cheerful demeanor each Sunday at church?  He did not see the energy he brought to everything he did?

I wanted my son to have a meaningful coming of age experience.  I knew that this could not happen in my local church.  There were not enough children of his age.  Additionally we were a family that stood out even if Chet had not had behavioral difficulties.  We were a gay couple, who had adopted transracially.  I wanted to have a faith community where we were one of a number of similar situations. 

Ultimately this meant that I had to be willing to drive 35 minutes to church each Sunday.  But our church has a lot of families built through adoption just like ours.  It has families that are gay.  It has families that are transracial.  It has families whose children struggle.  And we all work together to try and make sure that everyone has a meaningul worshipful experience.

When Chet went through coming of age, I was invited to speak with the group of young teens that comprised his COA class.  The teens and the mentors wanted to know how to help Chet have a meaningful experience and how to interact with him. They were open to discussing his triggers, what to do or say when he became stressed or fixated and how to help him participate in group experiences.  I remember crying when I finished the workshop.  Not because of sadness, because it was the first time that I felt that a group of people looked at my son and saw him as a person they wanted to respond to. Not a person they wanted to label and push to the side.  Chet went through the whole coming of age experience, including the retreat and the vision questing component. His experiences were deep and profound and his presence there did not cause anyone to have a less meaningful experience of their own.

As Chet moved into young adulthood he no longer wanted to sit with his family in church.  There are not a lot of experiences or ways that he can successfully asert his independence but church was one of those places.  Because his autism causes him to miss social nuances or misinterpret social cues though, it was not possible to just let him sit anywhere on his own. When the minister would ask a rhetorical question (or one that most people would silently ponder) Chet thought he should shout out his reponse. LOL  He is wiggly and twitchy and easily distracted by noises as filtering his environment is hard for him. 

Our church has a disability task force.  The group have made our facility handicapped assessible in a myriad of ways.  Wheelchairs can get in and out of the sanctuary and the bathrooms.  There are hearing asistance devices and large print hymnals available.  And they helped Chet. They met with me and said that they would be willing to work with me to train "church buddies" who would take turns sitting with Chet to help him handle his sanctuary experience in a way that would not detract from the experience of others.  I trained about 6 people.  All were kind and open.  Many said that they didn't know Chet was disabled, but they all thought he was a lot younger age wise than he truly was.  (if he was 18 or so when we did this, they were pegging him at 15)  None of them understood until we talked extensively that the kind of typical banter one would do with a teen was confusing to him and would lead to an escalation of behaviors. 

For about 2 years we intensively relied on the "buddy" system.  He would sit with a trained buddy at service and I would hook up with him at coffee hour time.  Usually I just came over and chatted up the buddy about something--sermon topic, upcoming event, the weather (LOL) and after a few minutes they would say goodbye to Chet and get to enjoy the remainder of fellowship on their own. 

Chet is 26 now.  He hasn't needed a weekly buddy for some time.  He can and does learn. Or if not learn, absorbs a pattern if it is consistant.  Most Sundays he sits by himself very proudly in the specific chair that the task force found for him.  (Due to sensory issues our wooden pews caused him to fidget excessively and complain that they made his leg go numb.  They found a padded chair and put it in the back of the church in a quiet location for him.  He can see the entire panorama of the service without feeling the need to swivel around and see who is behind him.  He helps with the ushering.  He helps with setting out the food at fellowship. He will come early and help set up for an event. His enthusiasm and desire to help remain as boundless as when he was a youngster.

But the climate of our church is really what makes the difference.  The warmth and the welcoming and yes, the accommodating, make this not just a place to reflect and be in relationship with the Source, but also a place where I know my entire family is welcome.

Having an autistic moment!

Today was our first Sunday back at church since the holiday.  We did not go to services on either Christmas Day or New Years Day.  On the way home, Chet told me that Mr. M. lost a tooth.  "Someone knocked it out," announced Chet.  "Honey I hope you didn't ask how he lost the tooth" I responded.  "Remmember that some people don't like personal questions like that." 
  "Oh don't worry, " Chet answered, "I just asked how he got that hole in his mouth when he smiled and said good morning."  Yup, I feel soooooo much better!

You have to laugh!

Chet and Kirsty had a rather large disagreement the other day.  Both were still annoyed when I got home from work and I tried to negotiate the minefield of the evening; supporting both of them in their respective positions without setting anyone off again.

K's perception is laudable but the reality of it is not the most emotionally supportive for Chet.  She believes that she needs to keep pushing him to try his best, to do better than he presently is and the most recent disagreement concerned handwriting.  She made him rewrite a blog post that he had written for me to input for him on his book and movie reviews.  Chet was angry and the second effort didn't look any better.  For me personally, I don't see fighting over this. He had OT in school for 6 years with no discernable improvement and I have never been able to easily read his handwriting. When I do the blog entry he reads his notes to me and I type what he dictates.

At any rate, I started cleaning up from supper and Chet announced that " I was much the kinder parent, though far more simplistic."

From my autistic son, this is a compliment.  Because I know he uses the english language a bit differently from the rest of us, I asked what he meant. (OK I will confess; I laughed and asked if that meant I was nice but simple minded.) He said no, he meant that I was kind and I didn't nit-pick.

It takes being willing and able to look beyond what is said and done sometimes when communicating with my Chet.  He truly has a heart of gold, but such a hard time sharing his thoughts in a way that makes sense to the rest of the world.  I tried to explain that Mom was just trying to help him work a little harder on some life skills because it would make things easier for him later on. But I do know that I see the situation differently; that there are things he probably has maxed out in ability wise and that is why I don't push. I figure if 25 years of skill building and intensive work on a behavior hasn't worked beyond a certain point, we have likely reached the limit of his ability to adapt and learn to that specific situation.

Maybe I am letting too much slide; I guess there will be no way to know until a lot further down the road. In the mean time, I'll go on being my simplistic self!