Thank you.

Well I just re-read what I wrote below, and for the love of God, I’m certainly making up for the last month of silence.  I apologize in advance for this lengthy post.    

I want to start by making one point very clear:  we were right, the behavior we saw over the prior 6 months last year really was not Coleman.  He could no more help his behavior than a drunk could help slurring his words. 

We had already treated Coleman for internal inflammation as a result of the active Lyme, EBV, and food allergies over the past two years.  And with good success – he was thriving.  But his sudden behavior change this past year prompted new testing which revealed that the EBV virus was surging ahead yet again.  The results were higher than ever.  The doctor ran another panel of tests that measured circulating levels of four autoantibodies in Coleman that were directed against specific neuronal antigens.  If elevated, the results would indicate that the inflammation had moved to Coleman’s brain and would certainly help explain the extraordinary slip in behavior.  All four of Coleman’s results were highly elevated.    

Autoimmune encephalitis is more common than you might think.  Although there has historically been much debate about it, recent discoveries and advances in science have provided much needed credibility to the condition.  The symptoms of brain inflammation look remarkably familiar to what many children on the spectrum experience:  sudden OCD, aggression, sensory overload, impaired motor function and more.  Books like Brain on Fire (Susannah Cahalan) and The Neuroscientist Who Lost Her Mind (Barbara Lipska) detail vivid accounts of descents into temporary madness as a result of brain inflammation.   Originally, research indicated Strep as the cause of the neuro inflammation but more recent research and discoveries reveal that many chronic infections (Lyme, EBV) left untreated can also cause the same reaction.  Furthermore, we learn more everyday about the gut/brain connection and how our compromised food chain is implicated in the process.  Many specialists believe now that brain inflammation may be a significant factor in autism, schizophrenia and Alzheimer Disease.  And wider recognition of the condition is evidenced by the recent growth in treatment centers for PANS (Pediatric Autoimmune Neuroencephalitis) across the country (including Mass General).  So we are making progress in this area.  Slowly but surely.  I am hopeful that we are nearing a time when the medical community will help to form more cohesive and consistent diagnoses and treatment options for children and adults suffering from autism as well as other disorders. 

And I hope that time comes soon - this nation’s pandemic isn’t going anywhere.  My stories are every other autism family’s stories.  We are everywhere.  Last week the CDC released new figures – 1 in 59 children has autism, up from the 2016 figure of 1 in 68.  As if that isn’t staggering enough, you should know that the data is 12 years old and is not a national sample.  Briefly, the CDC collects data on 8 year old children from about 11 different states who were diagnosed with autism.  They analyze the data over 4 years and then issue the report.  In other words, this year’s data (2018 release) was collected in 2014 and is based on kids born in 2006.  It does not consider any children born since 2006.   Need I remind you that it’s now 2018?  But the CDC has another branch, The National Center for Health Statistics, which issues another report called the National Health Interview Survey.  This report is nationally representative survey collected over a 2 year period which gives a more immediate look at autism rates.  That report, issued in November 2017 and based on data collected from 2014-2016, revealed an autism rate of 1 in 36.  And for boys the rate was 1 in 28.   Let that sink in for just a minute. Think about what our adult population is going to look like in 20 years?  At what point do the alarm bells sound?  The press barely covered either release, and those that did largely regurgitated the same bullshit mantra promoted by the CDC that proposes broader definitions of Autism and better efforts in diagnosis have driven the increase.  Really?  Where are all the autistic adults today then?  Dr.  Stephanie Seneff, a research scientist from MIT has made the dire prediction that by 2025, one in two children will be autistic.”  ONE IN TWO.  Do you think alarms will sound then?  At what rate do we move from passive acceptance to complete outrage?  God help our children and their children.  

As for Coleman, we are grateful we have found a doctor that is keen on helping children affected with autism.  And we are following a plan, treating Coleman with strong immune builders and anti-inflammatories.  And knock on wood it seems to be working.  He is laughing again, watching his shows again, and so, so much happier.  It’s like he shed that nasty layer that had enveloped him for the last six months.  And the improvements are across the board - school is seeing the same thing and they are as thrilled as we are.   Of course, we have many new bad habits he picked up during this regression that we’ll need to address but we are on it.

We are also taking this rebound in health as an opportunity to make some pretty drastic changes for Coleman.  We have hired a behaviorist to come to the house 3 days each week to move Coleman off of the computer and to learn to utilize his time more productively and to generalize everyday living skills.  We have enrolled him in weekly speech therapy to help him learn how to effectively communicate his needs, building on his functional communication goals in his IEP.  We have purchased training equipment similar to what he uses in gymnastic class to continue to build on his physical strength.  And we upped his bicycle-riding game this year with a bigger and better new bike.  This August, we are enrolled in a program that teaches children to independently ride a two-wheeler.  I can hardly wait.  As always, we continue to seek out social opportunities for Coleman.  Trust me when I say they are sporadic.  But thanks to South Shore SNAP (Special Needs Athletic Partnership), Coleman attended his first ever boxing class last week.  Offered at the Hingham Boxygen location, the program is fun and the team up there is absolutely top notch.  After initial trepidation, Coleman laughed and really enjoyed the first class (although he would not put on the gloves, so we are working on that.)  And we have SNAP baseball and soccer also coming up.  Coleman continues to need guidance in these activities but with every new chance he grows a little more.        

Perhaps most importantly, and what I am most excited about, is the new “Buddy” teams we have working with Coleman.  Desperate for social involvement, Coleman asks every day “what can we do today?”  When I remind him it’s a school day, he simply moves on to “what can we do after school?”   I struggle to come up with things, and weekends are the absolute worst.  “What should we do today?” he asks the moment he wakes up.  I try to sound excited and say things like “How about we go to the park!?” or “How about we play ball?!!” and he simply looks away for a moment, and then asks “Maybe you can call your friends?”   He means his friends, except Good lord, he doesn’t have any.  I try to reach out to some folks nearby who have children that know Coleman but it is difficult as I don’t want to pressure them and I understand kids have busy schedules.  So to pacify Coleman I often resort to lying.  I say “Ok, I can try.” And I pick up my cell and pretend to dial:  “Oh hi! It’s Coleman’s mom.  Can Johnny come over to play today?  No?  Oh okay maybe another time” I script this fake call out loud so he can hear and when I ‘hang up’ he stares at me.  “Maybe they can come tomorrow,” I offer optimistically.  He walks away sad, saying unenthusiastically “maybe we can go to the park.”  It’s like ground-hog heartache every Saturday.  So I put up a post on our town’s Facebook page looking to pay a teenage boy to be a ‘buddy’ to my boy for one hour a week on Saturdays.  And if you’re wondering if there are still good people left in this world, I can attest that there are because I was overwhelmed with responses.  Tons of boys in the high school responded – kids on various sports teams, kids involved in SNAP or Best Buddies, or kids who weren’t involved but just cared:  they all offered to come and play with Coleman.  And I had even more calls from parents saying their younger child would love to be a pal for Coleman.   I was so moved, so elated.  I actually considered for a moment booking them all!  His day would be neatly packed from 10am to 6pm both Saturday and Sunday with kids coming every hour to play.  Seriously, I’m not joking when I say I mentally played out that option several times.  But I know also that while Coleman craves this social interaction, he is not really able to effectively participate in it yet.  He doesn’t have the correct language skills or play skills to truly play – which is precisely the reason that having someone to play with is so important.  So against my “Go Big or Go Home” attitude, I opted to go slow and ultimately hired a neighborhood high school boy who used to be a friend of Emma’s.  He is honestly amazing with Coleman.  It’s taking some time, but Coleman is warming up to him and they are starting to have a nice time together.  We also have two boys that are true peers of Coleman – they are his age and one of them is a neighbor as well – that are coming over weekly or as often as their schedule allows.  These two boys are old souls - kind and gentle and loving.  I couldn’t have hand-picked a better duo to spend time with my boy.  And Coleman loves them.  Finally, I’m doing my best to take advantage of on-the-moment offers to play for Coleman.  In the past I would have shied away from this – knowing it takes Coleman some time to warm up to kids, and knowing it takes some time for kids to understand Coleman - but I promised myself for Coleman that I will make every effort.  So when a friend waved at me in a parking lot on Saturday, stopped her car, rolled down the window and asked “Is Coleman home this afternoon?  My boys are free” I was like damn right he is.  And, although there was a bit of chaos at the start (Emma’s friends were leaving while the boys were showing up and Coleman doesn’t do well with that kind of transition) and Coleman initially yelled “GOODBYE BOYS!  IT’S TIME FOR THE BOYS TO GO HOME!”, he managed to recover and the rest of the hour went really well.  All of these social experiences I believe are truly good for both parties, but they are like a drug to Coleman – they lift him for hours after the actual interaction.   We’re feeling very blessed to live in a community where so many people care and are willing to help.

   

Well, I’m finally done.  How was that for a let-me-rant-on-and-make-up-for-lost-time kind of post?  Are you still here?  J   Thank you for reading again today, and each of the last five years.  You all help me to be a better person.   I’ll close finally by adding a shout-out to my fellow autism moms.  I heard from so many of you after my last post.  Thank you all, I feel you.  We are in this together.  Hold onto hope, it’s a beautiful thing.

See you next April.

Birds Nest Catching

The Light At The End Of The Tunnel

I keep willing myself to write here.  I’ve started and stopped and started and stopped, over and over.  I can’t find the words this year. 

August through February were a bust for Coleman - but looking back now I see he recovered from it better than I did.  The tremendous struggle we dealt with, the surge of anger and aggression that lasted literally 6 months, left me in a place full of doubt and despair.  His OCD surged to new heights, and he became drastically rigid, unable or unwilling to move off of thoughts in his head.  He would not engage in simple things he had loved in the past, and even when he did, he did so unhappily and only to finish the routine and then slide back into his own thoughts.  We were alternately trying to engage him or trying to stop his sudden aggression over something as ridiculous as turning off the pantry light.  School notes indicated the same thing was occurring at school.  It was exhausting for all of us. 

During this time, I went to a clinic meeting at his school.  Before going to watch Coleman in action, I met with his team.  They talked to me about his general state over the last several months.  They were concerned about the resurgence of behaviors and combined with his growth, they wanted to create a new behavior plan.  His plan at that time involved a ‘calm down’ routine at his desk (doing puzzles) which worked well when he was at his desk, but they were seeing his behaviors in places like the gym or the caf, and getting him back to his class to perform the ‘calm down’ routine was growing increasingly more difficult.  We’d like you to think about our use of a safe room from Coleman, they said.  They kept talking, slowly, gently, knowing this would be a difficult conversation.  But the words safe room were echoing my head and I heard little else, my mind mentally scanning pictures of what a safe room looked like and absorbing what that implied.  I swallowed hard.  I felt like I might faint.  This is not Coleman, I said.  He is not like this, I said.  But the behaviors had been going on for several months by this point.  The rest of the meeting was uncomfortable for everyone, and Coleman’s angry stance when we finally went to watch him didn’t help alleviate the tension.  In the car, I sat and thought.  A safe room.  For my boy.  My God, what was happening.  That moment, right then, I started to lose hope. 

When you have nothing else, hope is an amazing little treasure.  It powers you on when the odds are against you, keeps you motivated through times of doubt, and keeps that tiny light at the end of the tunnel shining enough to keep you moving ahead.  Losing hope was not something I was prepared for.

A few weeks later, a note in Coleman’s backpack informed us that he was starting vocational evaluations.   At his school the vocational program includes teaching office work (shredding, folding letters and stuffing envelopes, sorting mail), hotel work (the have a mock hotel room to help kids learn to make beds), laundry (they have fully functional washers and dryers to teach kids how to do laundry and fold clothes), line assembly (simply taking items from larger piles and putting those into small packages);  they even have an in-house store where kids learn to bag groceries, ring on a cash register, and stock shelves.  It’s really an amazing program and honestly was one of the primary reasons we chose this school.  So I guess somewhere deep down I knew Coleman would eventually be on this path.  But the funny thing about having hope is that you believe in the impossible.   You believe things can change somehow, and I guess I put the whole vocational track thing out of my mind because the note that come home that day hit me like a truck.  Accepting that it was time to start down this path felt like conceding the race before the votes were even counted.  That night, as I lie in bed, I kept thinking about the prior five months, thinking about the behaviors, thinking about the safe room, thinking about vocation training.  I finally feel asleep and when I awoke, I realized the rest of my hope had silently and without warning disappeared.  It’s been an empty few weeks.  I think this why I have been unable to write this year. 

You would think I would be used to all of this by now.  Autism and all its glory.  You would think that the trials along the way would be scarcely a bump, that I could cross my arms defiantly,  point my head to the sky and with a dramatic flair exclaim “No Big Deal! This does not bother me at all!  I am resilient!  My faith is unshaken!”

But truth be told, there are many, many days when that is not the case.  I think more often than not, parents of special needs children (including me) are gasping for strength, holding back tears, frustrated and tired, and praying to God to please, let this change.  Please, let us have a different outcome.  Please, give us strength.    This road is not easy - let no one tell you differently.    All the feel-good stories, including our own, can’t mask the underlying heartache that goes hand in hand with autism.  

But, fortunately for me, God must be sick to death of hearing from me, because over the last couple of weeks I have been feeling stronger.  My mojo is coming back and I’m ready to fight again.  You’ll be happy to know I am done feeling sorry for myself.  Coleman seems to have rebounded nicely from the sharp setback we had this year - it just took me a heck of a lot longer to get here.  

So here we are, moving forward.   We really are very grateful for any opportunity Coleman has to improve his life, even if its shredding paper.  And we’ll keep working for more, keeping hoping for more. Because for my boy, the words "I give up" will never cross my lips. That tiny light at the end of the tunnel is shining again.

Happy Spring! Oh wait...

 

Saturday’s weather got us pretty excited about Spring and we decided finally it was time to get the bikes out.  Coleman has a new bike this year.  He grew so much that his old bike was too small with his knees hitting the handlebars.  Unfortunately, traditional training wheels (which Coleman still uses) are not made for larger bikes, but you can get pretty rad ‘adult’ training wheels special order from a solid bike company which we did for my boy (we used The Bicycle Link in Weymouth.)   Saturday was beautiful - the sun was shining, the air was warm and we had a lovely ride.  Coleman was thrilled to be back on the road.   Except the joke is on us.  Because this afternoon Coleman was all about getting on the bike again and holy banana it was absolutely freezing out.  So we dug out the coats and hats we literally just put away and went out for a spin.  Can’t wait to do it again tomorrow when it’s 35 degrees and overcast. 

Sorry I haven’t posted -- the spirit is willing but life is a time-suck and I can’t seem to get it together.   We are alive and well.   Happy Sprinter.  J

The Not So Glorious Times of Camp Chaos

I meant it when I ended last April saying things with Coleman were very, very good.  All aggression was gone, most OCD was gone, lots of bad habits were ended, countless unproductive routines were stopped...in all, so many good changes.  Coleman was happy, we were happy, and we felt that finally, truly, we were on the right path.  The changes in diet combined with medical supplements had proven to be a powerful force for Coleman.  I really believed there was a real possibility of a different outcome for my boy.  I believed that anything was possible.  And then Life said, “Hold my beer.”

It started as just a little crankiness.  Maybe he’s getting sick, I thought.  It persisted and after a couple of days he started touching things again.  He started yelling at the girls.  He stopped smiling.  And then driving, when I turned left onto Main Street, he exploded, yelling “No, go the other way!”  I started in disbelief in the rear-view mirror and thought, Houston, we have a problem. 

Over the next couple of weeks, his behaviors worsened.  Coleman was highly irritable, yelling at anyone that came his way.  He was perseverating on lights and routines and touching everything again.  His school notes came back with comments like “tough day again” and “doesn’t seem like himself”.  At the park, he kept to himself, not caring about the kids running around playing tag.  He stood facing a tree, scripting into his hand, putting together short angry phrases that had no meaning.  On his bike, I had to practically pull him along, so stuck was he in his own world of scripting and repeating.  And the beach, a place he had grown to love, was a disaster.  He made it impossible for any of us to enjoy, screaming at the girls to sit down, get back to the water, get out of the water, put the book down, pick it back up, don’t talk to your friend, go talk to your friend.  Holy hell we wanted to kill him.  And when we finally got him down to the water, he refused to go in more than a few inches, no matter how much we prodded him.  He seemed to forget completely how he had loved to go neck-deep and let the waves wash up over him, laughing excitedly as they approached.  Instead, he stood motionless in the ankle-deep water, scripting incomprehensible words and phrases, hand to his face, until we had to finally coax him back out of the water.  Summer turned to fall and he continued on this path,  He awoke angry every morning, turning the start of every day into a shouting match, so much so that the rest of us pretty much raced to see who could be the first one out of the house.  No more than 6 weeks after it had started, things had completely unravelled and nearly all of the gains Coleman had made over the previous 18 months were gone.  Left behind was a sad, angry boy who had stopped smiling and laughing, who seemed lost in a world behind his scripts and shows.  

It’s hard to drop so swiftly from great optimism to great doubt.  To question everything you are doing.  To begin to lose hope.  It was a fairly depressing year.  

Around mid-February after a particularly difficult day, I lie in bed staring at the ceiling and began to pray.  Mom, I thought, I need help here. I don’t know what to do.  I don’t know what is best, who to talk to, where to go.  I need help.  Please help me.

I feel asleep in tears and woke up as usual for the busy day ahead.  I dropped Emma at school, and had just arrived at my office when my phone buzzed.  I glanced at the text message and stopped in my tracks.  I was confused.  The message looked like it was from my mother.  It was a text that read in part, “Good morning love.  I can’t wait to see you.  I just want to tell you how much I miss you. Remember to do your very best and of course, how very much you are loved.”   I stared in disbelief.  I re-read the text again and with my heart racing, I tried to make sense of it.  I realized after a minute it was from Emma but I was still confused.  I closed and opened the message again, and amid my panic finally realized it was a screen shot.  Emma had taken a picture of a message my mom had sent to her years ago.  I quickly texted Emma, and asked why she had sent it. I knew she had no idea about my prayers the night before.  Emma said she didn’t know why but she had awoken with a strong feeling about my mother and couldn’t stop thinking about her.  So she went through her phone to look at old messages from her and found some.  She loved reading them and had forwarded one to me. 

It was a sign I desperately needed.  Keep going, stay strong.  She was there.  Silently, invisibly, continuously there.  

I cried at my desk reading the message again and then laughed and said out loud, “Thank you. Where the hell have you been?”  J

Welcome Back Year 5!!

Well hello and welcome back to year 5!   

I can’t believe another year has passed already.  

To kick of the year, let’s play a little game.  You’ve probably played this before with your kids – it’s called Opposites Day.  Pretty self-explanatory, right?  Everything you say is opposite of what you mean.  Ok, I’ll go first.

It has been an absolutely amazing year.  Nothing short of miraculous.  Gains galore.  Coleman has been so happy.  I mean so, so happy.  It’s almost hard to believe he could be so happy.  And thus, we as a family are also so happy.  Elated.  Brady Bunch on steroids.  This year will go down in the books as one of the best yet.  It’s been THAT good.   

Ok, game over.  I think you get my point. 

Still, here we are, trying to move forward, trying our best to not kill each other.  And we haven’t yet so I’ll take that as a win.   And, despite today’s snowfall, the seasons are changing and the weather is getting warmer, so we are staring straight ahead, hoping, nay begging, for a better year.  As we celebrate Autism Awareness Day today on Easter Monday, I am reminded about the possibility of renewal and that with each spring comes new life.  We are so ready.

It’s been about 6 weeks now since Coleman started on new antiviral supplements and **whispers quietly, knocks on wood ** they seems to be working.  The happy boy we have missed so desperately over the last year is re-emerging, his words are coming back stronger, and his beautiful laughter is filling our house and our hearts again.  God please let this stay.

Thank you all for coming back to check in and see how my boy is doing. 

Janet