If You Give a Boy A Cookie

I had planned to do the entire month this year in videos...just to show you all how amazing Coleman really is and how hard he works every day.  But I'm not 20 and I don't know all the cool tiktok tricks on videos and editing. Instead, I am barely able to operate my phone camera and gaming up for me is using iMovie.  Still, I do want to share some things Coleman has been hard working at.  Like eating.  We are always trying to think of new things to try - but it's never a one and done.  The same food has to be worked on daily for weeks.  And you have to always keep that new food in the rotation or Coleman will forget he likes it and all of the work is lost.  Thank God for the home team of therapists who stick to trying new things way more than I do.  They are tireless I tell you.   And his school program includes cooking and making meals together so they are working on him there too.  He had his first bite of a bagel with cream cheese in school last week!  So now we've added that one to our agenda too.     

Since Coleman's entire list of foods that he eats consists of about 10 items, there are plenty of things we can work on.  You'll be happy to know that I'm really focusing on nutritious and healthy options for my boy.  The video linked below highlights the work we've been doing over the last several weeks getting Coleman to eat a chocolate chip cookie.  That's right.  And you would think it would be a lot easier because really, what's not to love about a chocolate chip cookie?  But for Coleman, it's work.  Every day, try and try again.  Still, we are way ahead of where we have been in the past, and with every effort and every tiny taste, we make progress.  So I know we'll get there.  And not just with a cookie.  

To Just Let Things Be

 

I’m mostly happy with where we are at with Coleman.  He is really happy these days, and I’m so grateful for that.  But it’s more than that.  For so many years, we were trying to change things, trying to make things better for him.  Change Coleman’s behavior.  Change Coleman’s tics.  Change Coleman’s learning.  Change Coleman’s medicines.  Change Coleman’s supplements.  Change Coleman’s autism.   It’s a heavy burden to be striving for change all the time, especially when the change you seek is not to be found.  It’s a relief, honestly, to be where we are today;  to accept what is and believe everything is as it should be.  Life is much easier when we can just let things be.       

But from time to time I second guess myself.  Like when I come across articles as I did tonight.  “Autism-like Social Deficits Reversed by Epigenetic Drug”.  I stop scrolling on my laptop and stare.  A part of my brain wills me to go past it, to not read it.  But I have already clicked the link and am reading the article.  The content is well above my pay grade:

“A chromatin-loosening drug already approved as a cancer therapeutic may have another application—reversing the social deficits associated with autism spectrum disorder (ASD). If chromatin is packed too tightly, it can entomb genes, preventing their expression by closing them off from the cell's transcriptional machinery….   According to these scientists, brief treatment with a very low dose … restored social deficits in animal models of autism in a sustained fashion.”

I understand just enough to be dangerous.  Epigenetics is science focused on the expression of genes, and the ability to turn on or off genes rather than altering the DNA itself.  Several years ago I read a book by a physicist – her granddaughter was diagnosed with autism and she left her job to focus on evaluating and fixing his genes through epigenetics.  The story of course, is that she succeeded.  But more importantly, for years after that, she treated and helped hundreds of kids on the spectrum achieve similar results.  By the time I found her, she was no longer treating patients, but her prior years-long waitlist of parents desperate for help drove her to publish many free guides on epigenetics and how to test genes, how to interpret results and ways to alter various gene’s expressions.  It was challenging reading for me, but I felt sure that somewhere in it all was the cure I desperately wanted but could not find.

I think about that book again tonight after I read the article.  It’s been a few years since I read the book. I rifle through my bookshelf unsuccessfully to see if I can find it.  I consider for a minute looking the author up again.  Maybe I can plead with her to just look at Coleman’s data.   Maybe she can help.

I glance at Coleman from where I’m sitting.  He’s laughing out loud, watching The Bubble guppies on his computer.  I smile at him and he smiles his beautiful smile back at me.  I walk over to him, pull him close and whisper to him.  “You know I would do anything for you, right Buddy?” But he pushes me away like a typical teenager and points to his computer.  The characters are pretending they are race car drivers, and he and I repeat portions of the show back and forth, as if we too are race car drivers. He skips around the playroom happily. 

I go back to my laptop and stare at the article again.  After a few minutes, I close the article and close the computer.     

It's really hard sometimes to just let things be.  And not because Coleman isn’t just awesome as he is.  He is awesome.  Really awesome.  But sometimes letting things be feels a lot like giving up.  And I never want Coleman to think I gave up.  Especially since I never even found what we were searching for.  I wish so much that I could have found the secret that would have changed everything for my boy. 

But here we are.  I am desperate for a forgiveness from Coleman that I know I can never get.  A forgiveness for trying and failing so many times.  A forgiveness for being unable to change his story.  Lord it is a heavy.  But I am working on myself.  Working on knowing that giving up on change is not the same as giving up on Coleman.  Working on self forgiveness.  Working on extending us both the grace to accept each other as we are – with both strengths and weaknesses but above all with love.  Loads and loads of love.  That’s something we both can just let be.   

Happy Coley

 

So I really want to update but work is a total time suck right now...so in the meantime please enjoy this video of my boy being happy :)

Year 8

I consider myself very superstitious.  Like knocking on wood, not walking under ladders, bad things happen in three’s…all of it.  I nearly broke a knee once trying to catch a mirror that I accidentally knocked off a shelf.  Escaping seven years of bad luck would’ve been worth the broken knee.  For that reason, it’s with trepidation that I write the blog this year.  So lean in here for a second.  I’m going to whisper something very quietly.  Things are good.  Really good.  Maybe even great.  Coleman is very happy.   

Ok now go knock on every single piece of wood you find, please! 

Thank you for visiting again this year.  I hope you are all good too.

Janet

Thank You For Visiting

 

Well, here we are, last day of the month and I’m afraid I fell woefully short this year.  There is, for me, such joy in sharing our stories with all of you.  But I simply did not have the available time to do this blog justice this year.  Know that Coleman had plenty of challenges, but plenty of accomplishments too. 

Alongside the health issues, Coleman had to let another sibling leave for college.  Emma left in mid-August, and in the weeks leading up to her departure, he talked a lot about her leaving and we reminded him how Abby left and then came home, and that the same thing would happen with Emma.  But having them both gone was hard on him (Abby took a gap year but took a job in Vail for the season) and he asked for months when they would be home or when he would see them again until finally we decided to take him to visit Emma in Vermont.  He was super excited to go but as we strolled a beautiful farm there upon arrival, he was quiet and withdrawn.  He barely said anything for the entire weekend that we were there, and on the way home just said flatly “Emma is not coming home today.”  We had prepared him, of course, and I guess maybe he knew it, but I think perhaps leaving her again weighed on him so much that it darkened his mood the entire time we were there.  

Gus, the puppy we got for Coleman, has been little consolation in the girls’ absence.  Grown into a much larger dog now, Gus is a joy for everyone but Coleman.  He cares just enough to want to know exactly where Gus is at all times, but not enough to pet him or talk to him.  If Gus leaves the room, Coleman will ask where he went.  If Gus goes out for a walk, Coleman wants to go.  If he goes upstairs, Coleman wants him to come back down.  When he goes up to bed, he insists Gus come upstairs as well.  But ask Coleman to pet him or talk to him?  That’s a hard no.  In reality, Coleman’s relationship with Gus is an accurate metaphor for his relationship with pretty much most people:  I want to be near you but I don’t really want to talk to you. 

Coleman continues to work hard at mastering daily living skills, with the good help of school and our wonderful in-home services team.  He’s done an amazing job at learning to shower on his own and I can envision now (when I never could before) that he will actually get there and have independence in this area.  He is working on exercise too, and Covid gave him both the time and space to work on a ‘gym’ routine, including treadmill, spin bike, weights, and yoga.  Again, his home team put together an independent schedule with pictures that takes him through each of these activities. The objective is that eventually he will be able to come home from school, pick up the activity schedule and bang through each of the workouts independently.  I know what you’re thinking and I’m there with you:  now would be a good time to ask his team for my own workout activity schedule.  J

Coleman is back at school full time now, in the new program in Scituate that he loved so much last year.  I love the program too, where the teachers and aides focus on a much bigger picture than simply academics.  Coleman goes for walks, spends time helping in a garden, takes classes learning to use a microwave, or how to make breakfast – lots of different things.  To me, though, the thing I love best is that they allow Coleman to get up and walk around the classroom if he wants.  This is important because I think for Coleman, pacing is a coping mechanism.  He does it at home a lot, especially when feeling heightened emotion - excited, nervous or sad - and that his teacher recognizes this means so much to me.  They are a loving team, concerned about Coleman as a whole person, and making the change to attend this program was one of the best decisions we have made.   

Overall, yes we had some rough patches this year, but in many more ways it was good. Coleman is learning to adjust to new demands and new expectations.  He is learning to be flexible in the face of new challenges, and learning to accept that what is new may not be easy but is survivable.  And he’s learning that every single day we are given another chance to try again.  We’re enormously proud of him and the beautiful boy that he is.  

Thank you for visiting, you can never have too many super duper super swell friends. :)

Birds Nest Catching.

https://www.facebook.com/1447531923/videos/10225861215904212/

 

A Bedtime Story

 

WAIT! 

I can’t believe that in the array of good new I chose to share, I neglected to share the biggest and best news of all of Covid!!  It’s a short, beautiful story. 

Once upon a time there was a little boy who slept in his parent’s bed.  And then he didn’t.        The End.

 

Yay!!  Coleman is FINALLY in his own bed!! 

(Forget that we moved his actual bed into our room.  Forget that we now have a king bed, a queen bed and a dog bed in one room, vaguely resembling a flop house.  What matters is the kid is in his own bed!  Hip Hip Hooray for communal living!! )

Winning During Covid

 

Despite a few rough spots and the general displeasure that was Covid for everyone, we managed to find ways to have fun, and found many spots of happiness spattered throughout the year. 

Early in the summer we had the awesome treat of meeting up with Coleman’s Pan Mass Challenge team.  During his Leukemia days, he was a Dana Farber Pedal partner for a team riding in the Pan Mass.  Almost all of the kids in treatment are given a team to partner with and the team rides in honor of that child.  One of the guys on Coleman’s team, Gerry, has ridden every year since that, and has maintained Coleman as his partner, riding every year in his honor.  He updates all of his donors each year on Coleman’s progress and he’s raised an insane amount of money for Dana Farber over the last 15 years. We feel so enormously grateful to Gerry and his team.  This past summer, the team rode an adjusted ride due to COVID, riding over 100 miles and stopping at homes of their Pedal Partners!  They came to our house, met Coleman, and gave his own PMC flag.  When they left, we rode with them out of the neighborhood.  It was a day we’ll always remember!

Later in the summer we introduced Coleman to kayaking on the Harbor, which went remarkably well and led to several trips over the following weeks.  Coleman sat like a King as Billy paddled them both around the harbor in a two-person kayak.  The girls and I enjoyed a substantially less strenuous effort in single kayaks but we all agreed it was another activity we could add to a short list of things we could all do together.

And of course let’s not forget Storyland.  We certainly won’t – much to our collective dismay – we’ll be going there forever.  Coleman starts asking about his annual excursion to the roller coaster exactly one minute after we finish the trip in the prior year so we were going – Covid or not.  Emma lucked out, already away at school, but we dragged Abby along – literally dragged her into the car - and off we went.  We arrived safely, rode the roller coaster roughly 35 times and departed.  We probably said 1000 times over the course of 24 hours “We definitely just caught covid”  but we never did, and we enjoyed the three hour drive home in peace before Coleman asked as soon as we pulled into the driveway, “We can go again when?”

Perhaps, best, though, was Coleman’s birthday.  I mean, everyone this year was all “This is the worst birthday year ever!”  Well, Coleman had a fantastic Covid birthday so we’ve got that.  We decided to have a birthday party at Starland on the go-carts this year.   Coleman loves the go-carts and its outdoors so we figured maybe some kids would come despite Covid.  We had arranged to have the place available to us for an hour prior to opening to the public.  We invited all of the kids in his new class, but we were worried they wouldn’t join us both because of Covid and also because they barely knew Coleman – he had only been at his new school for 3 months before it closed due to Covid.  So we also invited our own extended family – to be sure we had some warm bodies around and Coleman and I weren’t circling the track alone.  Part of what he loves is the narrative I shout as we ride.  “See ya later, suckers!” or “Move over Buddy, we’re gonna win this race!”  It’s bad enough that I scream these phrases at complete strangers when we typically ride, but to scream them at no one would be a new level of crazy.   Well, everyone in his class came – even some of his teachers! – as did our family so it was a bash really.  We took as many rides as we could in the hour, giving everyone a chance to ride, and when it ended we sat up at the picnic tables and shared cupcakes and treats.  It was an amazing day, and it lifted Coleman for the entire weekend.  About a month ago he said, “Remember when you had your party?” which of course means he wants to do it again, and who am I to deny the child?  “I DO remember! That was a fun!  How about we have a party again in May!”  He jumped out of seat and started his excited pacing, repeating over and over again, “How about we have a party again in May!”  The boy deserves a second party is all I’m saying. 

So see, good things did happen!  Mini PanMass event, kayaking on the harbor, roller coaster at Storyland, and a birthday party at the Go Carts!  AND we took our Christmas tree down before St. Patrick’s Day this year!  We are GD Winning at life this year!! 

Talk to you tomorrow, wrap this year up!