A Posse of His Own #2

 

Some of you may remember our initial foray into track back in 2017.  The program was run through SNAP (Special Needs Athletic Partnership) in partnership with the South Shore Fireboltz and Coleman had an amazing experience.  One of the ‘coach’ volunteers at the time was his former Hingham teacher, and since this was shortly after Coleman left Hingham public schools, it was the first time he had seen her since leaving.  I wrote about that reunion previously, and the memories Coleman running with his old class brings me joy to this day. 

It also brings me sorrow, because Coleman had a really hard time when the program ended 6 weeks later.  I think he misunderstood what was happening and somewhere in his mind, I think he thought this was somehow the beginning of a return to Hingham, his friends, and Miss J.  We prepared him of course that it was only 5, then 4, then 3 etc weeks before it ended but he heard what he wanted to hear, and apparently the program ending was not something he wanted to hear. 

“Where’s track?”  he asked excitedly, the day after it ended. 

“It’s over, remember?” I responded.

“Where’s Miss J?” he asked without pause.

“Coley, track and Miss J are over.  We can see them next year.”

“Where are the kids?”, he asked again, not giving up.

This conversation went on for about two weeks, many, many times per day, until, sadly, one morning he stated flatly “Track is all gone.”    No amount of explaining helped.  He wanted nothing to do with conversation about track after that.  He didn’t want to look at photos from track, or videos from track, or even hear the word ‘track”.  It was terribly sad. 

We didn’t sign up again the following year.  Maybe that was foolish, but I didn’t think either of us could handle it.  The cruelty of giving him something he loved, only to take it away again six weeks later was just something that I couldn’t explain and he couldn’t understand.

Last spring, 5 years later, a teacher at Scituate mentioned Special Olympics Track.  Apparently, several kids from his class were going to do it.  I wondered if he would remember what track was and if he would want to try.  I sat with him one night the following week and said “Coley do you remember track in Hingham? Do you remember running at the high school with all the kids and Miss J.?”  He looked up quickly, and I knew he remembered.  Before he could respond I said “Some kids from school at going to go to track in Scituate?  It’s not with Miss J.  It will be different but fun.”  I named kids in his class, and told him that they would be there.  I watched him mentally process it, and when he walked away repeating “We’re going to track with the kids” I knew we were at least going to give it a try.   

Turns out, he loved it.  The track season for him was spectacular in every way.  It lasted for 3 months, twice weekly, and from day one, it was a hit.  It also happens to be where we experienced the single greatest social moment ever. 

We were running late one afternoon (shocking, I know) and when we arrived, the kids were about half-way around the track walking, doing their warm up lap.  I took Coleman’s water bottle from him and pointed across the field.  “See the kids over there?  Run across the grass and you can catch up to them.”  He walked at first and then started to move a little quicker in the direction of the group.  When he was about half way there, the kids on the track noticed him.  “Hey look its Coleman”, they yelled. “Coleman!” “Hey Coley!” Four of his friends from school came running across the field to meet him.  They were smiling and yelling, shooting up high fives, and hugging each other as they walked back to the track.  

This might seem overblown to you, but you just can’t even imagine how meaningful that moment was to both Coleman and I.  I stood in complete awe, so thrilled for my boy that other kids noticed him, other peers were happy to see him.  For the first time in his life, he had friends.  For Coleman, his gleeful, smiling face and twirling fingers said it all. Immeasurable happiness.  He finally had a posse of his own. 

 

Breakthrough 17 Years In The Making

 

I’m going to come out of the gate this year with our biggest accomplishment.  That way, if I drop the ball the rest of the month, you’ll have heard the best we’ve got.  😊

Last night, we went to Burtons and Coleman ate a meal from the menu. 

That’s it, folks.  Mic drop. 

17 years in the making:  6 years with a feeding tube, and 11 years since it was removed.   17 long years of eating the exact same thing everyday.  17 long years of feeding work:  trying and failing, starting and stopping, winning and losing.  And in one miraculous year, everything changed. 

The change was fairly sudden.  He literally went from tolerating taking bites of food that he was offered (and not enjoying it, i.e. the cookie videos from last year) to devouring an entire portion of something that was offered to him at school.  We followed up at home with the same foods he tried at school and he did the same thing for us - ate it all without prompting.   Then one night, Billy and I were eating pizza.  (Hard to believe, I know.)  Coleman had already had his dinner, and came over and stood, staring at us and the pizza.  Billy and I looked at each other surprised, and I mouthed “Do you think he wants some?!”  Billy nodded, so I took a slice and said to Coleman “It's pizza. Do you want to try some?” We were stunned when he said yes, and even more stunned when he took the slice and gobbled the entire thing up in moments.  It’s been game on since then, and between school, his home team, and us, Coleman has been offered all kinds of new options.  It's been an absolute thrill to watch him learning to eat again and to find joy in so many new foods.  Bagels with cream cheese (that texture!!!! ), hamburgers, grilled cheese with sliced baby tomatoes, chicken Caesar salad wraps (with the dressing!), chicken tenders and tater tots (feels like such a teenager meal!).  It's been a really fantastic breakthrough.  Although, he still won't eat the warm chocolate chip cookie, so I'm pretty sure he's not my kid.

It's hard to put into perspective the enormity of this change.   It’s just so immense.  My sister stopped by one afternoon and as she walked in, stopped dead in her tracks. “Oh my God, is Coleman eating a bagel?!”  If you know Coleman, you know.  And while Coleman can’t verbalize for us how he feels, I can just imagine his relief, and how good it must be to taste something new.  We are so, so proud of him and excited to have so many new options for lunch, dinner and snacks.  Breakfast, unfortunately, is a no go.  He refuses to change up the morning routine.  He’s still all about the yo.  Again, if you know Coleman, you know.  😊

Year 10!!! :)

 

I suppose I should stop counting.  I mean, I’m lucky if I have the year right to begin with (in year six, my first post was titled “Welcome Back to Year 7”) and what difference does it make anyway?  Another day, another dollar.  Que sera, sera.  Same old, same old, am I right?   Hello, No, Bitches!  This is our 10^th Year!!  Forget that I hardly even earned the check mark last year with 4 lousy posts.  Irrelevant, I say.  What’s important is that I’m here, and you’re here, and together we have made it to 10 years of this blog!  10 years of reading and writing, crying and laughing, damning and celebrating this chaotic life with autism.  My heart is full.  Thank you for coming back again. 

 

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