Birds Nest Catching

Birds Nest Catching

So there it is.   Another year in a nutshell. 

I’m not sure if it’s pathetic or impressive that I could sum up 365 days in 15 short posts, but either way it’s done.  These short peeks are, of course, just that – both the highs and lows are much more lasting than I could easily relate in a couple of paragraphs.  I think the most important fact is that it’s been an incredible year for us, and we look forward to the learning, trials and tribulations that are certain to come.  We’ve only just begun.  

Coleman has indeed made some great improvements this year, but we still have more left to do.  Many of our old habits remain, and we’ll need focused, hard work to overcome them.  For example, mornings remain an overall tough time.  The inherent quick pace of the morning, and accompanying chaos, is simply too stressful for Coleman.  In general, he struggles with multiple activities and conversations occurring around him at one time, but is better able to handle this later in the day, when everyone is finished coming and going.  But in the morning, the buzz of activity is worsened by the impending departure of the girls for school, overwhelming him and setting of daily hysteria.  He starts as soon as he sees the girls on the stairs, and he begins to yell in commander style for them to SIT DOWN!  Literally, he follows them as the come into the kitchen, into the pantry, at the fridge, behind them all the while yelling for them to sit down.  And when they finally sit to eat, he is calm and sits as well.  But the respite is short as morning meals are quick and before he has even calmed down, they are up again, at the sink putting dishes away, grabbing backpacks and heading out the door.  His yelling escalates the entire time.  “Please sit down! Have More! Sit down again!”  He keeps yelling, and soon we are practically yelling at him to stop.  He grabs at the girls, trying to push them into their seats, yelling and nearly crying.  Every morning.  We’ve tried to make the girls sit for a minute before they leave to help him relax. We count out loud so he understands the timing, but in the end, the minute isn’t enough.  Ten minutes isn’t enough.  He doesn’t want them to leave period. So we have not been able to successfully stop this chaos and, as a result, our mornings are what you would call slightly stressful.

We’ve also made no progress on our Supermarket trips which many of you are quite familiar with as you’ve seen him in action.  In all fairness, we haven’t yet even begun to work on this.  Some things you just accept until you have time to address them.  Coleman does not want me to stop and talk to anyone at all at the supermarket.  I have no idea why, but it sends him into a screaming, crying mess.  Someone will see me, give a friendly wave hello, and walk up and ask how things are going.  And Coleman starts his angry yelling “No Goodbye!!!”  He’s such a people person. J   So for those of you that have seen me at the supermarket, to whom I quickly put my index finger to my mouth, signing “Shhh”, until I was up close beside you and whispered to you as quickly and quietly as I could “I can’t talk right now…” and kept moving….  For all of you that have been wondering what the hell that was all about, now you know.    We have more work to do here. 

Much the same holds true when we are out on the bike.  With the warmer weather arriving, we will see more and more folks out and about, much to Coleman’s dismay.  I’ll use this time to say it was good seeing you, and talk to you later.  Because he will be a yelling, crazy, hot mess if you stop us on the street. 

The rain also remains an issue.  When I watch the forecast and it says rain all week, I want to shoot someone.  No, really, I do.  Coleman wakes up and goes straight to the window.  If it’s raining he turns to me and asks “Where is the rain?” knowing full well it’s pouring outside.  I respond “It’s raining a little but it will stop soon.”  I am a liar.  And he doesn’t buy it.  “No!!  Make the rain stop please?!” he pleads.  He continues to ask about 900 times before he leaves for school, only to open the door to see the rain, and sob “No rain please!!!”.  I look up and think Really, Mom, I could use a little help here. But I get nothing.  She must be sleeping J.    So we are still trying to figure out how to better deal with this.  School has gotten involved as well, because there too he is obsessed with the rain.  One Tuesday as I dropped him off, his teacher greeted me, standing under an umbrella.  “Have you seen the forecast?  It’s going to be a long week” she said, defeated.  I nodded I know as I opened Coleman’s door to his voice yelling “Make the rain stop!”   

Coleman’s scripting and his need to repeat words also remains, but I do feel that when things were strong medically after our first round with the antibiotics (the recent ‘glory’ months I like to call them) he did not require nearly as much of this.  Oddly, since the flare up, he repeats everything we say, rather than asking us to repeat it.  Literally every single word.  It’s like living with an echo.  It’s like living with an echo.  It’s funny at first.  It’s funny at first.  But then not so much.  But then not so much.  J   

But at least our goodbye phrase is down to a single set of words.  You may recall from the first year of this blog that Coleman requires us to yell some words or phrase as we leave each other – those words used to change each time.  They made no sense – “Ruby’s Picnic” or “Robot Repairman” or whatever nonsense words he came up with.  As you leave say the words to him, or else whoever is left with him will kill you when you come back.  So one tiny improvement is that we are down to a single phrase at the door.  Ah, not nearly as good as NO single phrase at the door, but I’ll grab onto any small increments of change that I can get.  The single phrase we have to say now is “Bird’s Nest Catching”. Don’t ask because I have no idea what the hell that means. Absolutely no idea.  But that is the phrase. My morning routine now includes falling out the front door and yelling back “Birds Nest Catching!”   I simply don’t drink enough for this.  So when you leave the house, kindly turn back and yell “Bird’s Nest Catching!!”   It’s like Coleman’s version of “Au Revoir!”

There are a great many more things we need to work on, far too many to list here and frankly too depressing.  I’d much prefer to focus on a couple of things at a time.  That way neither of us feels overwhelmed.  And then, in the longer run, we will have made some pretty amazing changes.  Like going to a new school.  Learning to ride a bike.  Eating Gluten Free foods.  Reading words independently.  Playing Ball socially.   Those are some pretty fantastic changes in just one year.  Can you imagine what we can get done in the future? 

Up next is another dietary change – casein free.  This will be tough, but I think it has the potential to be really meaningful for Coleman given the many signs he has of a dairy intolerance.  We’re not really looking forward to it, to be honest, but we know we are going to do it.  And if you know of a good-tasting Alfredo sauce that is casein free, hit me up.   

We also have dental work on the horizon. You can imagine the fun that will be.  We had been going monthly to a dentist in Cohasset (Kristine Grazioso at Children’s Dentistry who is honestly nothing short of absolutely wonderful and whom I highly recommend) to try and get Coleman desensitized to just sitting in the dental chair. We had limited success at best.  Coleman was always super happy walking into the office, talking away happily to himself as we sat in the waiting room. (Although last visit, as we walked in, he stated loudly “Remember this is a dentist office, not a barnyard, so don’t act like an animal.”  Honest to God.  I have no idea where that came from. Other parents looked up at me and gave me the stink eye.)  Then even walking down the hall to Dr. Grazioso’s office, he was all charming to everyone, smiling and working his magic.  But that was where it ended.  As soon as he stepped in her office, gloves dropped and all bets were off.  Dr. Grazioso was amazing with Coleman, despite that he yelled pretty much the entire time, every time.  He always ended his yelling with “No thank you!” and then a sweet "See you soon!"  which always made her laugh.  But it seems my little man is more like a little shark, and despite that all of his baby teeth have not yet fallen out, his second set of teeth have already come in, leaving him with two rows of teeth in a few spots.  Never have I seen such a crazy thing.  So we have to consider a sedated appointment to pull some teeth, get a good cleaning done, and put on sealants.  I can hardly wait. 

And finally, most importantly, we have so much more to do in our biomed treatment.  We are only at the very beginning of the healing process and we have many, many more things to do.  I will let you all know that, three days into the first antibiotic, and Coleman is like a new person.  You simply would have to see him to believe the change.  It’s just that big of a change.  He is even back to reading all his words everywhere, which he had stopped over the past few weeks.  This morning at the library, I went through a "First Words" baby book with him, and he read every page.  Unbelievable.  On the down side, from the flare up we have regressed a bit and now have two new habits to break:  This new talking to the wall thing, for one.  And then the echo. And then the echo.  I’m not sure how we’ll address either one, but we’ll figure it out.  At least he is far more agreeable now.   We also have to finish getting Coleman’s gut in shape, build him up nutritionally, continue to understand and treat the chronic illnesses, and eventually detoxification of heavy metals.  It’s a long road.  It is true that this is a marathon and not a sprint, and we will take it that way.  Slow, steady, meaningful changes.  That's what we are all about now.  I have never felt more sure when I say The Best is Yet To Come. 

Thank you for listening and sharing our journey with us again, and we’ll see you all again next year.    

Until then, Birds Nest Catching. 

Regression

Regression

The next big step for us in terms of helping Coleman was to go Gluten Free.  Gluten Free/Casein Free to be exact, which meant removing all gluten and all milk products.  It is reported that a great number of kids with autism improve significantly by going GF/CF.   And please don’t throw that lame study at me that spread like wildfire across every major newspaper and media outlet last September:  “…gluten free diet doesn’t improve autism symptoms…”  Please.  They had 14 kids in their ‘study’.  14 kids.  How is that scientifically significant?   I could do a larger study just by using kids I know.  And they removed any child from the study that had GI issues.  Wait, what?  That is precisely the issue.  And the test lasted a whopping 4 weeks.  It takes 3 months to 1 year for Gluten to clear from the body so 4 weeks?  Really?   That study single-handedly undermined innumerable kids with autism across the country.  Many parents will now opt to not even try, and that’s super discouraging since most biomed doctors put the percentage of kids that improve after giving up gluten at around 60%.  I’m not saying GF works for all kids.  It doesn’t.  But if you have a child with autism, you sure as hell have to give it a go.  60% is hard to ignore.

That said, I wasn’t looking forward to making the change.  Dietary changes are formidable on neuro-typical kids, let alone kids with autism.  I remember the dread I felt when Emma was going GF.  The ‘This Is Going To Be Hell’ mindset.  Surprisingly, for Emma, it wasn’t.  It took a little trial and error to weed out the lousy products and find acceptable replacements, but after only a couple of weeks, we had the shopping list down.  And Emma herself could feel the difference in just a few days so for her, that was enough to rid herself of gluten forever.  But with Coleman, I knew it was a different ballgame entirely.  With him, that ‘This is Going to Be Hell’ mindset was spot on. 

Given Coleman’s history with the feeding tube and all the work it took to get him to eat orally, I was nervous about making changes and purposely went slowly.  Coleman is self-limiting in terms of foods, and foods even that we used to have, we no longer have.  He refuses to eat them or gags when you try to offer them.  It’s a frustrating reality, and is very common among kids with autism.  Coleman currently has four primary meals:  Waffles, Chicken Parm (with grilled chicken), Chicken Broccoli and Ziti (in alfredo sauce), and Mac n’ Cheese (pasta with milk and a slice of American cheese if you can stomach that).  In other words, Coleman eats Gluten and Casein almost exclusively.  He will nibble (and I mean seriously baby-style bites) of some fruit and carrots, but largely his diet is the four foods above.  The general population is probably aghast at this, but I know how long we worked to even get 4 foods, and I know so many other Autism families have the exact same issues.  Our transition to GF is one step in a much larger plan to widen Coleman’s eating repertoire. 

So, I decided to start with gluten first, and attack casein second.  Gluten would be easier to change, I imagined, since I was having a hellish time trying to find a dairy free alfredo sauce that didn’t taste like cardboard.  And with Gluten, I really had to just change pasta and waffles.  Through our experience with Emma, we had already found a delicious GF pasta that I was sure we could use as a substitute.  So I started by using one tablespoon of GF pasta, and about 5-6 tablespoons of regular pasta.  He never noticed.  We kept that up for a few days and then added 2 tablespoons for a few days.  And then half and half.    At the same time, we were trying GF waffles every day, without success.  I would hand the half-waffle to him (he eats them dry, without syrup) and he would examine it closely and then yell “NO NOT THIS ONE!!” and give it back to me.  No amount of lying to him that it was the same, or trying to fool him would make him eat it.  I tried to wait him out on a few occasions, but he was stubborn, and as a result, he went to school without breakfast for several days.  We tried brand after brand.  I bought three separate waffle irons, all trying to recreate a frozen store bought waffle, but he would have no part of any of them.  Finally, on a last ditch effort, I found a new organic GF version at Whole Foods which we hadn’t yet tried.  I brought it home on a Sunday night, toasted it, and gave it to him.  For the first time, he didn’t hand it right back to me.  As Emma and I spied at him inconspicuously from the counter, he took a small bite.  And then another.  WINNER WINNER CHICKEN DINNER, we found a waffle folks!!  And so Billy went right back up to Whole Foods, bought the remaining 6 boxes they had left in the freezer and ordered a case to be picked up later.  And that Sunday was the last day of Gluten for my boy.  Starting the next morning, we pulled the rest of the Gluten pasta, switched to the new waffles, and we were Gluten Free.  Coleman definitely ate less, but he was eating.  By the end of the week, we were in the throes of Gluten Withdrawal. 

Coleman was a nightmare.  Yelling, screaming, and miserable.  It was a stressful week, but we stayed strong and held ground, expecting to come out of it each day.  But the second week was no better, and school reports began to sound like the early days:  “difficult day, very hard to transition” and “unhappy most of the day”.  By the middle of the third week, I was sure something was wrong. He had regressed back to where we began, even starting to hit again, which he hadn’t done in a very long time.  It seemed, in fact, things were even worse than when we began.  Coleman was scripting more than ever, the OCD was back with a vengeance, and he developed a new habit of getting close up to the wall and scripting as if he was talking to the wall.  He even seemed to have developed a new tic of head nodding.  And to top it off, he was repeating every single word you said.  He said the word “Beach ball” continuously one day for the entire ride to school.  That’s about 2,000 beach balls.  The prior three glorious months seemed to have slipped right through our fingers in just a few short weeks. 

For the first time since we began the biomed, I was worried.  I was ok with not making progress, with not making immediate gains, but I did not sign up for a regression to a place worse than where we started.  I was super nervous, and Coleman’s anxiety was through the roof.  As a result, the entire house was stressed.  I called Bock’s office and left a message.  I didn’t hear back and the next day, out of fear, I stopped all the supplements.  I didn’t think it had anything to do with them, especially since we had been taking them for months by this point, but I just didn’t know what else to do.  I had read a lot about food related regressions, but this seemed worse.  And it had gone on longer than a week.  Bock’s office called back on Thursday, and ordered bloodwork, which we did that Friday.  We already had a previously scheduled appointment with Bock the following week, so we hunkered down and waited for the results and the visit.

On a side note, that visit was actually last Friday so we are practically in real time now!  How’s that for a quick year recap?!  J

We made the trek to upstate New York as part of our April school vacation plans.  You can imagine how happy the girls were about riding 4 hours to a doctor appointment for Coleman.  You can further imagine their mood after we spent $375 to go to Six Flags, and the only ride we went on was the kiddie roller coaster.  Coleman was thrilled, but for the girls it was a total bust.  Don’t even consider going unless you are going to pony up the extra $100 per person for the fast pass thingy, which we didn’t know about until after we has waited in line to get in the park for 50 minutes, only to arrive at the 2.5 hour line for the real roller coaster.  Who waits for that?  Not us.  So all in all, the girls really took one for the team on this trip, but at least we shared some good laughs along the way.  

The appointment with Bock went well.  As we talked about Coleman’s behavior, Bock felt strongly it was a viral flare up, particularly given the OCD and new tics.  In his experience, gluten withdrawal rarely lasted beyond a week.   He ordered a repeat Lyme test to see what kind of progress we had made against the strains (apparently there are several different strains, each treated with a different antibiotic).  In the meantime, he asked us to re-start the original antibiotic we has been on for 30 days at the start.  In addition, because the labs were not yet back from the prior Friday’s bloodwork, he prescribed an antiviral based on his suspicion that he was having some kind of viral issue.

We headed back home, relieved that Coleman’s issues were not a result of the supplements.  It was a long ride back, particularly because it was pouring.  And between the loud, pounding rain on the roof, the thunder, and Coleman’s non-stop yelling for us to make the rain stop, it’s no wonder we didn’t drive off the road.  Intentionally. 

On Monday, I was able to log onto the Children’s Hospital portal and view Coleman’s lab results.  Bock was right.  The Epstein Barr virus was through the roof.  The range for testing is:

17.9  or less:  negative
18.0 – 21.9 :  Indeterminate
22.0 or greater:  Detected.
Coleman’s level:    >750.

So I could spend an entire day writing here what I have learned about EBV over the last 48 hours, and it still wouldn’t cover it.  This is one of those chronic, debilitating viruses that is often misunderstood.  It’s estimated that roughly 95% of all adults have antibodies against this virus, indicating that they were infected at some point in their lives.  For many people, the symptoms are mild and go unnoticed.  For some, there is a sore throat, tender lymph nodes and slight fever, along with fatigue.  This is the most common form of the virus, hitting teenagers as mono.  When severe, you can get hit with about six weeks of fatigue and an enlarged spleen.  Like most infections, the body makes antibodies against the virus to destroy it and prevent its return.  However, in some cases, particularly when the immune system is weak and not working properly (like most kids with autism) the virus takes up residence in your organs and gets continually reactivated, causing a chronic inflammatory response.  In addition, those organs themselves begin to be impacted.  Worse still, some kids, through an autoimmune issue, will make not make antibodies to the virus, but instead make antibodies to the protective myelin sheath covering nerves.  Their own immune system is gnawing away at their insulation of nerves. 

EBV has been associated with the development of serious medical issues including neurological conditions, GI problems, Guillain- Barre, Hodgkin Lymphoma, and autoimmune diseases.  I even saw research that said T-cell cancers have been linked to EBV, which I find fascinating since Coleman had T-cell Leukemia. 

There is a boatload that I don’t know about EBV. I’m working on it.    

What I do know is this:   Coleman is acting recently like he had acted the previous 3 or 4 years: difficult, angry, aggressive.  And all that time, we thought that was just part of being autistic.  And then we saw Dr. Bock who figured out Coleman had several chronic infections, including Lyme and EBV and placed him on 30 days of an antibiotic.  And it was then that we saw Coleman as he really is – a happy, sweet, calm little boy that we so adore. And he stayed that was for a solid 3 months.  Until this flare up. 

What I hate most about this is the realization that for years, Coleman was in pain.  I read that chronic viruses make you feel you were hit by a truck.  The way you feel on the first day of a bad head cold, when your head hurts, your brain is foggy, your body is fatigued, and all you want to do is lie down.  I hate to think that my boy felt that way for years, and that we didn’t know.  I hate to think that we assumed it was all just part of being autistic. 

Yet, this realization is also one the best things that has happened to us.   Because now we know.  And we can help.  Figuring out that piece of the very large puzzle was a massive win for Coleman.

Coleman still has autism – there is no magic bullet here.  But as we treat these underlying conditions, we alleviate pain and inflammation, and give Coleman the chance to be present, to be available for learning.  Only then will he be able to show us what he can do, just like he did a few months ago.  Those days are coming again.  Just you wait.

Our N.Y. Road Trip Pit Stop

Recovery

I wanted to take this day to share a recovery story.  So you know what we’re thinking about as we move forward in Coleman’s treatment plan.  This is one story of hundreds.  HUNDREDS.  I don’t think we’ll get to where this lucky woman got – it would be amazing though – but I do truly believe we can make meaningful changes.  Damn right, we already have.   So click the link below and spend a few minutes here to take in this absolutely miraculous true story of one mother’s road to recovery.   You won’t forget it. 

 https://recoveryrd.com/2015/08/03/autism-recovery-is-real-my-sons-story/

Falling Down

Falling Down

Lest you start to think that we are being too hard on the King over here, that we are stuffing him with supplements and changing up his poor little life, I thought I would share this photo.  I thought you would appreciate that while we are trying to make positive changes in our collective life, there are times that we regress and do the stupidest, most ridiculous and unconstructive things for Coleman.  This is one. 

He finds people falling down hilarious.  I’d like to think it’s because he watched someone fall on T.V. that was intentionally hilarious, like Jim Carrey or Amy Schumer, but that’s not the case.  He just thinks falling is funny stuff.   One night when we were all upstairs in the girls’ room saying goodnight, Coleman turned to Billy and said with a huge grin, “Fall down!”  Billy stared at him confused.  “What?”  “Fall down!” he said again.  Billy looked at me, and then at the girls, and then did what any normal loving father would do.  He fell to the ground in the most loud and preposterous way.  Coleman nearly died laughing.  And so it began, another well-intentioned activity that we have to now somehow break. 

Because we loved seeing him laugh like that, we all started falling everywhere.  And he loved it.  Every time he asked us “Fall down?” with that adorable grin, we hit the floor lickety split with all of the “Oh No!”s and “UGH HELP!”s we could muster up, and we all had a good laugh over it.  Only now, we can’t stop.  I have to fall on my way out the door to work each day.   “Mama fall down?” he asks (demands?) as I step out the door.  And I oblige.  God only knows what our neighbors think.  Or, in the rare moment we are all in the same room, he exclaims suddenly to all of us “Fall Down Everyone!” and this mildly insane family does just that, as if there is an incoming rocket aimed at our heads, we dive to the floor and Coleman laughs and laughs.  Most often it is Billy who is the target of the request, and Coleman haunts him multiple times each day for his performance.   “Fall down Dad?” and if Billy tries to say no, or say “Maybe later”, or walk away, Coleman is after him, relentless, pulling at him, tugging his shirt, haunting him, pleading with him  “Just once.  Fall down Dad?”  until finally, Billy gives in and falls to ground in a heap of loud noises.  And Coleman leans over him laughing his little head off. 

So you can rest easy that the King is still in charge, and that despite our best efforts, he will always reign mighty over some things.  And if you see Coleman and he says to you “Fall down!” hit the deck, please, and put on a good show.  You’ve got some tough competition over here. 

Books To Read

Reading

After Bock’s book, I started to read again.  I forgot how much I loved to read.

I searched online for books and articles, reading and ordering as I went.  I had read about three or four when I remembered about another book.  About two years ago, we were invited to a neighbor’s house for a football party.  We brought Coleman, which was risky since he wasn’t very familiar with this house and of course he wasn’t interested in football.  He stayed in the kitchen watching his DVD, and I stood at the threshold between the kitchen and the family room, loosely watching the game beside him.  My neighbor’s father was there too.  He was a retired doctor, a smart Harvard grad, kind and soft spoken.  He came out to the kitchen and asked about Coleman.  When I told him he was autistic, he quietly nodded.  He didn’t say much, but he watched Coleman for a few minutes then went back in to watch the game.  The next day, my friend swung by with a book.  “My Dad wanted you to have this.  He thought you might find it interesting.”   The book was called The Brain that Changes Itself by Norman Doidge.  I thanked her and after she left I read the back cover.  It seemed a little out there, about neuroscience and brain plasticity, and I wondered why her father thought I would like it.  I skimmed it but didn’t read it.  But now, as I started to learn a little about the brain and autism, I thought about that book.  I went to my room, took the book from the bookshelf, dusted it off, and read it.  Holy Cow, that book was amazing.  Absolutely the most fascinating thing I have read in a long time.  It was not based on autism specifically.  Rather, the premise of the book was that the brain can heal, that conditions once thought of as permanent can be changed, that neuroplasticity (the brains ability to adapt to obstacles) is a very real science.  It provided story after story of true events where the brain overcame even the most challenging obstacles.  I finally understood why her Dad had given me the book.   It was his very gentlemanly way of telling me “There is more you can do for Coleman.  It’s not too late to help him.”   I get that now.

The more I read, the more surprised I became about how much people were actually doing to actively try and heal their children.  Parents across the Globe were actively managing their child’s autism treatment plan, from dietary changes to nutritional supplements to detox.  Parents who refused to believe nothing could be done, parents who started to wonder if food or environment played a role in their child’s condition, parents who questioned the standard response of “It’s because he has Autism” when they asked why their child had chronic constipation or fits of uncontrollable hitting or a sudden need to touch every corner in sight.  These parents laid the groundwork for the rest of us.      

I’ll say upfront that I understand too the knock on this whole approach:  that biomed doctors are just taking your hard earned money and leading you on when there is no cure, taking advantage of the single strand of hope that desperate parents will latch on to.  It’s possible I suppose.  I’m sure there are some doctors like that out there.  But there are many, many great doctors who are at the frontier of what will be the future treatment of autism:  Individualized care.  Because it is the only approach that will work.  Some of these doctors fell into this practice – they had success with one child, and word spread and soon others were lining up the door.  Some of them chose this path because of their background in biochemistry, and their own research that proved links not commonly discussed in the medical community.  And a great many more doctors practice this approach because they too had a child with autism.  They lived this life, and through their own skill, knowledge and hard work discovered an approach that worked for their own child.  And now they choose to share that learning with others.   

There exist tons of blogs and websites authored by moms that have already walked this path.  They are funny and honest and informative, and they offer a wonderful parent perspective.  There are national organizations including TACA  (Talk About Curing Autism Now) and GENERATION RESCUE for parents that provide information, resources and support for families dealing with autism.  These sites also offer a great deal of research and news.  There also exist national conferences you can attend where some of the most brilliant researchers in the field of Autism will speak about cutting edge research and promising new approaches for improved treatment.   You can often find videos of these speakers posted on the sites above, or on other online conferences.   By now, I’ve listened to many doctors and scientists speak on specific biomed topics and it’s absolutely intriguing.  I never liked science.  But now, well, it’s the most exciting part about all of this:  that the basis is so completely supported by science.  It makes so much sense.  The gut-brain connection, methylation pathways, the role of vitamins and minerals in our body, cellular function and what that really means and what it needs to work properly,  the body’s ability to detox – all of it.  It’s fascinating.   I can’t get enough of the information.  My nephew says I’ve gone rogue.  Maybe I have.  But once you figure this all out, you want like hell to share it, to help inform others.   I wish I had learned it all sooner.   

So, on that note, I thought I would list out a few books – and if you know someone who has a child with autism, you could suggest one of them.  Or, if you have an autistic child yourself, maybe you could pick one up.  I understand that all parents reach this point at different times.  I don’t think I would have been receptive to this much earlier in Coleman’s diagnosis.  I wanted to believe he would heal on his own.  I wanted to believe that it wouldn’t be that bad. I wanted to believe we would all be fine.  Clearly, I acted in exactly that manner.  Maybe some parents (me included) need to get to the really difficult, trying times before you can accept that it will not get better on its own.  Maybe some parents need more time.  But when you are ready, when you start to wonder Am I doing enough?  pick up one of these books.  It will change everything. 

I’m currently reading Autism:  Pathways to Recovery by Dr. Amy Yasko.  It’s very technical but I love it.  I wish I had gone to medical school.  J

For books I’ve already read, I’ll put here first the Bock book which I have already discussed at length, as well as the book noted above.  Both are great reads. 

http://www.amazon.com/Healing-New-Childhood-Epidemics-Groundbreaking/dp/0345494512/ref=sr_1_1?ie=UTF8&qid=1461505525&sr=8-1&keywords=kenneth+bock

http://www.amazon.com/Brain-That-Changes-Itself-Frontiers/dp/0143113100/ref=sr_1_1?ie=UTF8&qid=1461509492&sr=8-1&keywords=norman+doidge+the+brain+that+changes+itself

The next book I would recommend most is Unraveling the Mystery of Autism and Persuasive Development Disorder by Karyn Seroussi.  This book was ahead of its time, written by a Mom who was one of the early learners about food sensitivities and how it can impactful it can be in Autism.  Karyn consulted medical papers, researched via the internet, and networked with other parents, finally tracing the onset of her child’s autism to an immune system breakdown.    It read like a diary and was short but super interesting.  An excellent first read for a parent starting this journey. 

http://www.amazon.com/Unraveling-Mystery-Pervasive-Developmental-Disorder/dp/0767907981/ref=sr_1_sc_1?ie=UTF8&qid=1461503084&sr=8-1-spell&keywords=unravleing+the+mysteryof+autism

Up next is Cure Your Child With Food by Kelly Dorfman.  Another fascinating book – and not just for kids with autism.  Kelly Dorfman is a nutritionist who does an excellent job connecting hidden links between nutrition and childhood ailments.  It was here that we figured out Emma had a gluten sensitivity.  Emma had been having severe headaches and stomach aches for nearly a year, back and forth to doctors, without any success.  After I read this book, and learned a bit about Gluten Intolerance (vs. Celiac) we decided to trial a week without gluten.  For the first time in more than a year, there were no headaches. She hasn’t gone back to gluten since, and she is infinitely better.   And for Coleman, the book linked a possible milk intolerance for us.  According to Dorfman, if your child is having difficulty growing, or has occasional blood in their stool, before even going for a bone scan, you should try eliminating milk (casein).  Interesting since, for years, Coleman has had traces of blood in his stool.  He is tiny for his age, not even on the growth charts, and at 11 ½ years old, and 60 lbs, he is just now moving up from his size 5-6 pants to a solid size 7.  He has been to an endocrinologist several times for bone scans and growth assessments to try and determine why he isn’t growing, without any success.  So you can imagine my surprise when I read about the milk sensitivity in this book.  No one ever mentioned that before.    

http://www.amazon.com/Cure-Your-Child-Food-Connection/dp/0761175830/ref=sr_1_1?ie=UTF8&qid=1461506576&sr=8-1&keywords=kelly+dorfman+Cure+Your+Child+with+Food

Another good book outlining symptoms and approaches is Healing and Preventing Autism by Jenny McCarthy and Jerry Kartzinel, MD.  You can say what you want about Jenny McCarthy but she is doing a boatload to shine the light on this topic.  And she lived it.  Her son was nonverbal, stimming, and suffered seizures.  She fought hard to bring him back, seeing top neurologist and drastically changing his diet and adding supplements.  Her son is now recovered.  She has made it her life journey to help inform other parents that there is help, there is a way to recover.  And she’s doing a pretty damn good job at it. 

http://www.amazon.com/Healing-Preventing-Autism-Complete-Guide/dp/0452295920/ref=sr_1_1?ie=UTF8&qid=1461507006&sr=8-1&keywords=Healing+an+preventing+autism+jenny+mccarthy

Relating to the Gut/Brain connection, and the old adage, you are what you eat, check out Brain Maker by David Permutter, MD.  You’ll start to think twice about what you put into your body.  Frankly, knowing what I do now, and knowing what I have consumed in my life and what I have not, it’s somewhat of a miracle that I am still living. J  

http://www.amazon.com/Brain-Maker-Microbes-Protect-Brain%C2%96/dp/0316380105/ref=sr_1_1?ie=UTF8&qid=1461506681&sr=8-1&keywords=brain+maker

Some others – in no particular order are:

Disconnected Kids, by Dr. Robert Melillo.

http://www.amazon.com/Disconnected-Kids-Groundbreaking-Neurological-Disorders/dp/0399535608/ref=sr_1_1?ie=UTF8&qid=1461510102&sr=8-1&keywords=Disconnected+Kids

Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride. 

http://www.amazon.com/Psychology-Syndrome-D-D-D-H-D-Schizophrenia/dp/0954852028/ref=sr_1_1?s=books&ie=UTF8&qid=1461510173&sr=1-1&keywords=gut+and+psychology+syndrome

Children with Starving Brains by Jaquelyn McCandless, MD.

http://www.amazon.com/Children-Starving-Brains-Treatment-Spectrum/dp/1883647177/ref=sr_1_1?s=books&ie=UTF8&qid=1461510232&sr=1-1&keywords=Children+with+starving+brains

There are lots more, but this should be a good start!!   Happy Reading!

The Athlete

The Athlete

So, around the same time we started the supplements for Coleman, we started to ramp up his activity level.  I’ve said in the past, finding extra-curricular activities for kids like Coleman is very, very difficult.  He wants so much to be with typical kids, yet is not able to interact with them appropriately for typical after school activities.  So we’ve been feeling our way around some new things, and much to our collective happiness, Coleman has been enjoying it all. 

We started with Soccer this past fall.  Hingham runs a Special Needs Athletic Partnership (SNAP) program geared at kids of all ages with disabilities.  The program is run by adults with the help of neuro-typical teenagers, and attempts to make otherwise inaccessible activities available to these kids.  This fall was our first foray into it, and the soccer program was a hit with Coleman.   It was run like a soccer clinic (not really games), giving the kids a chance to just sort of mess around with the ball and kick it into the net.  The folks that volunteered in the program were awesome, and the teenagers were great with the kids.  This is sexist, but I always find it so impressive when teenage boys volunteer for this sort of thing.  Taking them right out of their comfort zone and throwing them in with the likes of Coleman makes for a true test of character – and these kids were all really great.  Coleman was hilarious as he moved at his typical snail’s pace, even kicking (pushing?) a soccer ball towards the net.  He literally would move so slowly that the ball’s movement was almost imperceptible.  Still, pushing it toward the net and the coach would yell “YEAH COLEMAN!!  YOU ARE SO CLOSE!!  KEEP GOING BUDDY!!”  It was good fun, and despite Coleman’s lackluster performance and enthusiasm, he really enjoyed it, and would talk about going non-stop all week. 

Shortly after soccer ended, we began our season at Loon.  Many of you who are friends with me on Facebook already know the wonderful progress we saw with Coleman this ski season.  But for those of you that missed it, it was nothing short of spectacular.  Coleman loves to go to NH – less because of the skiing, we figured out, but more because it provided an enclosed space in which we were all together.  And Coleman loves when everyone is home. In fact, many of our weekend issues when we are not up North surround Coleman’s difficulty handling departures and absences, particularly relating to Abby and Emma.  Drop-offs can be a nightmare.  But the girls are busy teenagers, and weekends they are off with friends or working.  Their absence causes Coleman much distress, asking non-stop where they are and when they will be home.  Heaven forbid they go to a sleepover.   College should be a real treat for all of us.  But at Loon, after a full day of skiing, everyone is pretty worn out, and for the most part, we have dinner together and hang in.  This makes Coleman so very, very happy.  So happy, in fact, that all week he asks “4 more days then New Hampshire?” and the countdown continues each day.  Skiing itself?  Well in the past that was a nasty side effect of getting the stay-at-home bliss that he so loved.  And we had to prep for 6-7 weeks ahead, getting him ready for helmet, boots, skis, and the rest of the gear necessary for skiing.  And even then, he tolerated it at best.  There was no love of the sport.  This year?  Totally different story.  He eagerly talked about skiing and on DAY ONE he put all the gear on, walked out to the slope, turned to me and said “Be back soon?” and was off.  DAY ONE.  And he didn’t stray from that heavenly attitude the entire season.  He was such a champ.  Even his coaches would say to him “Do you want to ski more or take a break Coleman?” and he would say “Ski more!” All the folks at NEDS, who have seen him over the past three seasons now, were thrilled to see him so agreeable and actually enjoying his time there.  Ah, it was really, really wonderful for us all. 

He also ice skated for the first time in his life this year.  His new school ran a social program, taking the kids to the rink once a week on Mondays throughout the winter.  When they sent home the permission slip, I laughed.  I cannot imagine he will enjoy this, I thought.  Skates? Slippery ice?  Trouble standing up?  But his teachers took him anyway and my little man loved it, laughing all the while.  Every Monday he would ask excitedly “Skating today?!”  He surprised us all.    

More recently, we began a gymnastics class on Sunday mornings which again, he loves.  I would say it’s more of a good PT session, with rolling and climbing on mats, swinging from parallel bars, and jumping over small obstacles, as well as the beloved trampoline.  But he loves this all and asks about going every week.  I only wish there were more kids in the class – it is a special needs class and he is in it alone.   He doesn’t complain at all – but I know he would love it more if there were other kids. 

We are also trying at home to capitalize on his new interest in activities, setting up play programs in the playroom as a break from the computer.  These activities include a counting game, a Smartmax magnetic building activity, a Lego set with picture to follow to make a small house, and coloring and writing activities.  He doesn’t adore these yet, but does them easily without complaining.  With the warmer weather approaching, we have started to also move some activities outside.  We’ve been doing a bounce-pass game with his ball and he loves it.  We start off slow, and then say “time to go fast Coley” and speed up the bouncing as fast as he can handle it.  He loves this game and laughs hilariously when one of us misses it. 

In all, I guess you could say Coleman’s become quite the athlete.  J   In the next few weeks, he’ll start a new swim class, and I am super excited for that.  He loves the pool and learning to swim is a necessity.  We’ve also signed up for the next SNAP session, which is track.  I can’t wait for this one - I know Coleman is going to LOVE it.  Not only because some of his friends and Miss J. will be there, and not only because Abby and some of her pals from the High School track team are volunteering, but because he adores watching people run.  So this should be hilarious.  I took him to the track a couple of weeks ago to prep him for what was coming, so he would understand what I meant when I said “track”.  The video is below.  Back off Abby, you’re not the only kid in this house doing hurdles.  J

Changes

Changes

So nearly everything I’ve read about Biomed healing talks about how long it can take.  The common analogy is that Biomed healing is not a sprint, it’s a marathon.  As such, and to try to harness my expectations, I was very much keeping in the state of mind that we wouldn’t see any serious improvements for several months.  My plan was to re-evaluate after a year, and see where we were.  I really had no plans on abandoning anything, but figured after a year it would be a good time to figure out if we needed to rebalance priorities.  So I was very much surprised when, after only two weeks, I started noticing changes. 

The first was at the library on the morning after I had given Coleman his Methyl B12 shot.  I take Coleman to the library every Saturday morning.  He doesn’t enjoy books at all, despite various attempts at including them in one of the many nighttime rituals.  I started the library trip as a means to get him used to sitting and at least looking at a book.  On our first trip there were a lot of loud “NO THANK YOU”s and “ALL DONE”s but after a few weeks, he adjusted to calmly sitting through a short story.  Still, some days he barely looks at the book, instead looking away and scripting on about some show he had watched earlier.  I have to redirect him, closing the book and getting him to stop and look at me.  “I’m ready” he finally states and we open the book again and go on for another couple of pages, until he inevitably starts scripting again and we repeat the process. 

On this particular Saturday, Coleman seemed more ‘up’ than usual, and instead of his leisurely (super slow) saunter up the path to the library, he moved at a quick pace to the door and up the ramp to the children’s section.  Once there, he was unusually attentive to the book.  He would stop me before I could turn the page and stare up close at the words, examining them like it was the first time he could see.  He pointed to the words, looked at me to read what it said, then stared back again at the word.  He did this for several pages.  I only had to redirect him once or twice throughout the entire thing.  It was an absolutely noticeable change.  I thought about the B12 he had that morning.  Interesting, I thought.  Then we headed down to the coloring table.  We took our seats at the table and I started helping Coleman draw a stick figure.  He can almost do this on his own now, we’ve done it so many times together.  As we were working on it, a little girl came to the table and sat across from Coleman.  He stopped coloring and stared at her.

“Hi. What’s your name?” he asked.

Oh, how I pray you can understand the magnitude of this.  Thank God Abby was with us this day so I had a witness.  She looked up as soon as he said it and stared wide eyed at him and then at me.

“I’m Emily” the little girl answered.   

“Hi Emily” Coleman said back.

“What’s your name?” she asked him.

I looked at him, incredulous, staring, anxious… and my little man who has never had a back and forth conversation like this with anyone, who has never initiated such a conversation, who has never responded appropriately without prompting, simply said “I’m Coleman.”

Sound the goddamn trumpets everyone because shit just got real.  A true honest-to-God back and forth conversation that lasted a precious 10 seconds or so.  Abby and I stared speechless.  Literally.  It was all I could do to not get up and hug that little girl.  And I was praising Coleman so much for the amazing job talking that the little girl probably thought I was a little wacky anyway.  And as we got up to leave, I was so distracted that I left his paper on the table.  Emily came running over to us with it.

“You forgot your picture, Coleman” she said, handing him the sheet of paper.

“Thanks Emily” he responded as he took the picture from her.

 And that, my friends, was the moment that I knew we were on the right path.

 We saw so many things over the next few months that I could hardly believe the changes. There were many far more subtle changes than drastic, but still some were just as surprising as the library visit.  His focus on words and letters came alive, and he was suddenly stopping anytime he saw words to try to read them. In the supermarket, he tugged at my arm. “Fresh?” he asked.  I was confused and asked him to repeat it.  “Fresh…” he said again.  “Fresh what?” I asked confused.  He pointed above my head.  On the wall above the bakery it said “Fresh Bakery”.  And so began his reading of words.  Never once had he so much as noticed a giant banner hanging, and suddenly, I couldn’t go down the aisle in the supermarket without stopping every 10 seconds to read words to him.  It was that sudden of a change.  We now try to find words whenever we are out, pointing to signs and store names, asking him “What does that say, Coleman?”  He stares at the words, really trying to figure it out. And I’ll tell you it was pretty damn shocking to see how many words he could actually read

His expressive language seemed to get a kick start as well, and he would say things that encompassed multiple thoughts, something he had never been able to do in the past.  For example, on the ride back from New Hampshire one Sunday, he called from the back seat, “Bathroom?” which meant he had to go.  “Ok, bud, I’ll stop at the next exit and you can go.”  Satisfied, he returned his attention to his DVD, and a few minutes later asked “Max and Ruby?”   He was watching a different show and he wanted Max and Ruby.  “Ok, give me the DVD” I said as I reached back, intending to swap out the DVD.  He looked up and said instead, “It’s ok.  You can change it when you stop.”  Those Exact Words.  Oh, how hard it is here to express the meaningfulness of such a statement, how hard those thoughts are for him to verbalize.  How he could not only understand we would be stopping soon, and that we could change the DVD at that time, but also that he could also put those thoughts into words, and that he was ok with waiting until then.  Trust me when I say it was striking.  Abby was sitting beside me and after he said it, she said “Wow, that was impressive.”  And it was.    

He also was more engaged, more interested in what was going on around him, and that became apparent in many daily activities.  But over Christmas, it was unmistakable.  Never a fan of presents, he refused to open gifts in the past. We never knew exactly what he didn’t like about it, but at birthdays or Christmas he would run out of the room or just yell “NO THANK YOU” when you tried to get him to open presents.  So this year I only wrapped one or two of his gifts.  And on Christmas morning, I regretted it.  As we opened gifts, we asked him if he wanted to open one and he smiled.  He opened that gift and was talking about it all the while.  “What is this?” he was saying.  And when he got the wrapping paper off, he exclaimed with excitement “It’s a box!”  And when we showed him that he had to open the box, and there was gift inside, he did so and was super interested in all of it.  He didn’t care much for the actual gift itself, but for the first time ever, he actually wanted to participate in the activity.  It was the best Christmas present for all of us. 

Above all, the most drastic and noticeable change in Coleman was the overall reduction in his anxiety.  This was a game changer.  Even in school, where they track the number of aggressions and tantrums Coleman has on a daily basis, there was a noticeable difference.  He went from 10.7 aggressions per day when he started, down to 5.0 before we began the supplements.  In January –March, he averaged just 1 per day.  And zero tantrums.  ZERO.  His School/Home Journal came home every day with comments like “Great day again”, “Excellent work at the desk”, “Great mood”.  And we saw the same thing at home.  It was like someone had ratcheted down his internal meter exponentially.  Every night I found myself saying “I can’t believe how low key he is!” and saying to Billy “Isn’t this great?  He is so happy.”  I think the reduction in stress across our household declined ten-fold.  We all lived a little better during this time.  We were even able to start eliminating some of the unproductive OCD habits.  We approached this slowly but made meaningful progress.  For example, we started with one of the before-bed OCD routines of touching all the corners of Emma’s bed.  We said “Tonight you can touch them, but in 2 more days we won’t touch them anymore ok?” He paused.  “In two days I won’t touch them?” he asked.  “Right.  You can touch them tonight but in two days we’ll stop.  You don’t need to touch them anymore. You’re fine!” I said optimistically.  And the next night we repeated it, and said “One more day and then no touching” and on the next night, he looked at me as he approached Emma’s bed and asked “You don’t need to touch them?”  “Nah! You’re fine!” I exclaimed like this was some great piece of news.  And that was the end of that.  This was simply not possible before. 

We used the same approach to break out of the “Go that way” habit he was so deadlocked into.  You might recall how he would completely melt down if we drove a different way home, sending Coleman into hours of unstoppable hysteria.  With this new Coleman, though, I thought we had an opening. “Today we’ll go that way, but tomorrow, when we go to gymnastics, we are going to go this way, ok?” and I pointed the opposite direction than we normally took.  I reminded him of that plan as we drove to gymnastics the next day too and after gymnastics, as we approached the dreaded intersection, I reminded him again.  “Remember, today we are going to go this way.  It’s really fast!  Later we can go that way again.”  And I held my breath as I turned right onto Main Street.  But my amazing, calm little man just repeated me.  “We can go that way later.”  And again, that was the end of that.  Now I drive down Main Street at least once every week to keep it alive for us.  Two OCD habits down, about one hundred more to go.  J

So the changes are absolutely real.  Perhaps they sound small to you – I don’t really know – but to us, well, these are mountain-moving kinds of changes.  So we are keeping on this path, cautiously but resolutely moving forward.  We have a long way to go, but we can do this.  We will do this.