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