The Fall Setback

The Fall Setback

We had a wonderful celebration yesterday for the first anniversary of my mom’s passing.  Several of her friends came, along with the entire crazy family.  We attended an anniversary mass, and then had everyone back here afterwards.  It was a great day and evening, and judging from the number of sibling hangovers today, there was no shortage on fun.  My mother would have expected nothing less.  So the timing of this along with where we are in retelling our past year’s events with Coleman is perfect. 

After our appointment with Bock in late September, life went on as we eagerly awaited the arrival of the prescriptions and supplements.  Coleman celebrated his 11^th birthday, and for the first time, we had a ‘friend’ birthday party for him.  We don’t usually do this because, well honestly, he doesn’t like birthdays.  He doesn’t like the Happy Birthday song, he doesn’t eat cake or ice cream, he doesn’t have ‘friends’, and he doesn’t like to open presents.  So pretty much birthdays aren’t his thing.   But this year, we had Kidzone in our bag of tricks, and we knew how much he loved that place.  We invited a very small group of kids, primarily neighbors, to join us at Kidzone for play and then had them back to our house for cake and ice cream. 

All I can say is that we are very, very blessed to have these families in our life, let alone our neighborhood.    Best birthday celebration we’ve ever had, hands down.  Coleman didn’t stop smiling the entire time there, and he ran around with those kids for a solid hour and a half – without any involvement from me!  He’d run up to me every so often with some comment like “You go on the slide?” and I would act all excited for him and say “Oh yeah! Have fun!!!” and off he would run to the slide with the quartet of kids.  God, they were good to him.  Asking him questions, following where he led, and even, on a very close call, holding him up when he was centimeters from falling back down the inflatable slide stairs.  There wasn’t a lot of conversation between them, and I’m sure much of what he did say they didn’t understand.  But they never said a word, never complained to their parents, never asked when it was time to go.  They laughed and smiled, and coaxed him with “Where should we go next Coleman?”  They were like mini adults, taking his hand, helping him up the ladders, down the slides, and through the bumpy houses.  It was an outstanding 90 minutes. 

A few days later the package of supplements finally came and we officially began our road to recovery.  As luck would have it, we hit a bump only three weeks in.  Coleman stopped drinking his juice.   And then he stopped eating too.  He wasn’t getting much yet in terms of supplements – we were supposed to add a new one in every 2-3 days, leaving just enough time between each to see if there was any reaction.  But I was cautious – I didn’t want to rush into anything, so I was doing 5 days before adding each one in.  So I felt pretty sure it wasn’t the supplements.  Still, since they were being mixed in his juice, I backed off to see if he would start to drink again.  He didn’t and remained irritable and still refused to eat anything.  By the end of the second day, I was sure it was strep.  This was exactly how he had presented in the past.  We went in for a strep test, and sure enough, it came back positive.  Due to a very serious strep infection the prior year that involved several trips to the ER and nearly led to a much bigger throat infection (all because he did not respond to a 10 days dose of Amoxicillin) we were prescribed Cephalexin and went on our merry way.  Only not so merry.  He vomited for 60 hours before we could even get the antibiotic into him.  After 5 days he ate his first bite of food.  2 days later he began pooping blood.  A lot of it.   We were terrified.  We went back to the doctor and provided stool samples for testing, but had to wait another week for results.  The heavy blood continued the entire week.  He was so sickly, laying on the couch like he hadn’t since the Leukemia days.   The bacterial tests all came back negative, but still the blood continued.  It was extraordinarily frustrating as our pediatrician didn’t seem very concerned.  She felt it was possibly a reaction to the Cephalexin and that we’d just have to let it run its course.  Coleman had been out of school for more than 2 weeks.   We were begging time at work, slipping in late, leaving early, trying to cover the hours he was at home along side Sue, who thank God was able to come most of the days.  After another weekend with bright red stools and 8x/day diarrhea, we went against our doctor’s suggestion and called Children’s Emergency and spoke with the GI doctor on call.  I needed to be seen, I said.  I cannot wait any longer.  I was a wreck and thought something was very seriously wrong with my boy.  We went in on that Monday morning, 17 days after it began.  And as I held Coleman’s hand walking through the parking lot into the hospital, he stopped.  He looked up to his right side, smiled and then looked back toward me.  “Where is nana?” he asked?  It was the first time he had even mentioned her name in the 7 months since she had passed.   He looked around like she was walking with us. “Where is nana?” he asked again.  “Can we see her?” he continued, still smiling.  Honest to God.  It was as if she was there, whispering to him.  It was the most comforting sign yet.   I know it sounds nutty, but I am absolutely sure that he could see her.  “I think she’s right here with us buddy” I said.   He just smiled and kept walking.  I knew then that we were good.  No matter what happened, she had his back.   

That very afternoon things improved.  No joke.  And the next day, he was 100% back to himself.  No blood, no diarrhea.  And I thought of my mom, pictured her smugly nodding her head, so thrilled she is able to help like this:  “See what I can do from here?   You’re welcome.”

So finally healthy again, we started again where we had left off in the Bock plan.  It was the end of November, and the weather was starting to turn colder.  Hopefully by the spring, I thought, we’ll be able to see some changes.  Turns out, it would be much sooner than that. 

The Results

The Results

We had our follow up with Bock as scheduled several weeks later.  Turns out there was quite a bit not working properly in our little man.

For starters, he tested positive for Lyme disease.  I have since learned a bit about Lyme, and in particular the testing.  The CDC (you know how I feel about this organization) currently recommends a two tier testing when Lyme is suspected:  first an ELISA to screen for the disease, and then if positive, to confirm with the Western Blot.  The first problem is that the ELISA screening is often done too early:  during the first four to six weeks of Lyme infection, most people have not yet developed the antibody response that the ELISA test measures.  The other problem is that even later in testing, the test is still extremely insensitive, and fails to identify patients with Lyme 54% of the time!  Even the College of American Pathologists found that ELISA tests do not have adequate sensitivity to be used for screening.  So why are we still using it?  Why the lovely CDC recommendation of course.  So now you know.  If you suspect Lyme in your children (if you find a tick on them, particularly if the tic is engorged, or you see the red rash afterwards), demand the Western Blot test. 

He also tested positive for Epstein Barr, the same virus that causes Mono.  And Coxsackie virus.  In addition, he had more the two times the normal level of yeast in his system.  He was significantly low in several vitamins including B, D and A.  He had low sulphation and was quite low in glutathione (body’s chief detox agent).  He had abnormal gut bacteria, inflammation, and was on the upper limit for metabolites in his urine (leaky gut).  He also tested positive for Folate Receptor antibodies, indicating a lack of cerebral folate (CFD).  Finally, to our surprise, we found out he was allergic to peanuts and soy.  Jeeeesh.  Billy and I felt terrible.  How badly must have out little man have been feeling?  We had no way of knowing.

So all that bad news was also the good news because it meant there was a lot that could be done.   We started immediately on an antibiotic to combat the Lyme and the other chronic viruses.  “This may very well help with the OCD as well” Bock told us.  For a lot of kids, Lyme disease coincides with sudden onset OCD.  And the timing would have been right for Coleman – his OCS started in the summer when tick season is high. 

We also started on Nystatin for the yeast.  I knew that he would be positive for this.  Yeast is a fungus and it is believed when there is an overgrowth, children can have fog-like, low energy symptoms.  Coleman is very much like this – if he is doing almost anything (besides watching his shows, during which he is quite lively) he is the slowest human being you have ever seen.  I had been secretly hoping this would be positive – only so that maybe with treatment, some of Coleman’s spacey-ness would lift. 

We also started to address the Cerebral Folate issue.  Folate is critical in the replication of new red blood cells, particularly early in life when cells are growing quickly. Due to the blood/brain barrier, for folate to enter the CNS (Central Nervous System), it must be carried across by Folate Receptors.  Folate binds to the Folate Receptor on one side of the blood vessel, and is released on the other side, into the CNS.  The Folate Receptor then is recycled to go back and pick up more Folate.  However, in some kids (a high percentage of kids with autism), antibodies bind themselves to the Folate Receptors, causing them to become dysfunctional, and this starving the CNS of the critical folate.  Without folate, cells can’t grow or function properly and can lead to cell death.  Many kids who remain untreated begin having seizures.  I’m obviously simplifying this highly complicated molecular scientific process, but given the associated complications, this was an area I was hot to address.  I knew a lot of children with autism that had seizures, and for most of them, it started during puberty.  Coleman is fast approaching that point.   I was also concerned because Folate Receptor antibodies were also found to be associated with juvenile rheumatoid arthritis.  My mother had severe rheumatoid arthritis and I remember well the life-long pain associated with it.    For Coleman, we started a regimen on this involving methyl B12 and L-methylfolate.  The methyl B12 is a shot, given every 3 days.  It is the easiest of all of the treatments to give – nothing to try to get him to swallow, and the needle is tiny, and a subcutaneous injection (just into fat, right below the skin) is not painful.   He takes it easily.  The methylfolate is a capsule, given several times each day. 

In addition to all of that, we started on a slew of other supplements as well, including vitamins D and E, Biocidin, Monolaurin, Magnesium Citrate, as well as a few homeopathic remedies for constipation.  And we still had the omega oil and probiotics as well.  I was brought back to the Chemo days when we had to keep a chart of exactly what medicines Coleman had and at what times.  Today we have a chart for Coleman with dates, times and supplement notes that is more complicated than any of his chemo spreadsheets. 

The hardest part of it all is getting the supplements into Coleman, given his very tiny food repertoire.  I refuse to mess with his food, and will not mix anything in it.  I feel very much like the biggest mistake we made during the chemo days was trying to hide the medicines in his food (even though that was what the doctors told us to do.)  Maybe Coleman was unlike other kids, but the saying  “he will eat when he gets hungry.  He won’t starve”, did not apply to him.  He flat out stopped eating.  And when he lost more than half his body weight, we had to go to a feeding tube.  But by then, it was too late in terms of getting him to eat again.  He strongly associated food with bad taste and vomiting, and he wouldn’t even so much as lick anything.  For over 5 years.  So, now, after years of feeding therapy, he actually eats a few things, but only a few.  And I can’t risk losing them.  So we are treading very, very carefully over here on this stuff.  I’m using juice a lot more than I’d prefer, but it’s a placeholder for now until I can figure out a better way to get them into him.  So far, pretty good.   We’ve had a few mishaps, like figuring out that we can’t give him the supplements before school.  He doesn’t eat much early in the morning, and apparently, if taken without food, omega oils will make him vomit all over himself.  In the car.  On the highway.  In rush hour traffic.  We stopped giving him that one in the morning pretty quickly. 

I’ve joined a few Facebook groups of parents all working toward the same goal of healing their children.  That has been helpful.  And I’ve met several people locally who are actively managing the same process – it’s wonderful to have people to learn from nearby, friends to commiserate and compare notes with.  Like my friend who turned me on to all of this with her suggestion of getting the Bock book.  As for her son?  Three years in, they are, and he’s nearly fully recovered.  It can happen.  It’s happening every single day around us.  There is hope. 

The Appointment

The Appointment

The appointment crept up more quickly than I had expected and before I knew it, Billy and I and Coleman were in the car driving for our overnight trip to “see my friend” (as we told Coleman) in New York.  We had to be at his office at 9 am for lab work and Coleman couldn’t eat for 12 hours prior so we drove up the day before and tried to make it seem like an adventure.  We stopped at a rest stop once we hit New York and took the token NY picture for you all J  He was great in the car and perfect at the hotel, amazing when you consider the girls were not with us.  And in the morning, when he asked for breakfast, we acted all surprised that we didn’t have any waffles, angrily stomping around the room saying “Coleman where ARE they??!!  We better go buy some!” He bought this charade, and laughed as we headed out the door.  I explained that we had to first stop at my friends place so they could “look at his blood – it’ll be a little pinch on your arm.  Very quick”, and then we would get some waffles.  He was ok with this plan until we got there and he panicked over the blood draw.  Although it took three of us had to hold him down, once they got the needle in he was very, very patient waiting as they filled 13 vials.  Being the good, Clampett family that we are, we brought our toaster and waffles with us, so as soon as he finished, we asked to use their kitchen, plugged in the trusty lifesaver, and gave him his waffles.  And all was good.   

The appointment was at 10:30, and we didn’t leave there until after 3.  You would not believe how good Coleman was.  A total champ.  I know my mother was there that day, helping us again.  J    

It was interesting to be in front of Dr. Bock.  He was kind and quiet, and well versed in common autistic symptoms and behaviors.  He was the first doctor I had been to that I felt really understood Coleman, and that gave me a great sense of confidence.  More than that, though, I was beginning to feel hopeful. 

Bock had asked us to prepare a timeline prior to our arrival and he spent a great deal of time going over that, going through Coleman’s history, asking questions, making notes, and asking more questions.  He put several events together that we hadn’t, and after a couple of hours, he put down his pen and told us his thoughts.  He felt fairly confident he could take care of Coleman’s OCD and substantially reduce his anxiety.  He also added that he thought he could help with Coleman’s GI issues, get him off the Miralax, and hopefully help eradicate some of the fog he seemed to dwell in.  And if all of those things fell into place, the structure and teaching he was getting in school and at home would be absorbed more readily and we should see good progress.  He had only one word of caution: age.  “If Coleman was three or four years old, I would say we have a pretty good shot at recovering him.  But he’s nearly 11, and I just don’t have enough history with kids his age to predict a fully successful outcome.  But I know we can make some meaningful progress.”  To be honest, he had me at OCD improvements.  Anything above that, well that was gravy really.  Our biggest issues on a day to day basis involved the OCD and anxiety.  Even in school, the most difficult parts of Coleman’s day still consisted of breaking fast-adopted, non-productive OCD driven routines.  So Bock could have stopped right then and I was in.  And as for age, I wasn’t discouraged.  He didn’t say it wasn’t possible.  He only said he didn’t see enough kids Coleman’s age.  And I could believe that.  Although biomed has been around more than 25 years, in the last 10 years there has been an explosion of growth, due in part to the growing body of research linking gut health and food intolerances to brain health, as well as increased awareness due to the rapid expansion of social media and celebrities like Jenny McCarthy.  But for parents with older autistic children, they already tend to think “it’s too late.”  The idea of trying to change eating habits and add supplements is overwhelming in a child that is a teenager.   But for parents of younger children, the changes are less formidable – it’s certainly easier to start new habits than to try to break long term, old habits in teenage children.

So I hung onto the good news, put the ‘age’ issue on the back burner, and focused on the plan Bock was presenting.    Given Coleman’s complicated medical history, we all agreed that casting a wide net in terms of baseline testing was the way to go, so we did broad, comprehensive blood work and stool samples.  Bock provided a short-term plan until the results came in, largely aimed at starting to heal Coleman’s gut, with some basic supplements, a probiotic, and omega oils.  “Let’s see what we get in the lab work, and then we’ll formulate an action plan.”   We scheduled a follow-up for 6 weeks later, and oddly, I found myself hoping that the blood work would come back with all sorts of problems.  “What if everything comes back completely normal?” I asked.  Bock answered without hesitation.  “It’s not game-over.  There are many paths we can take.  But I don’t think that will be the case.  I think we’re going to find plenty of things to work with in his results.”  And he was right. 

The Book

The Book

Not that long ago, a good friend called me after her young son had been diagnosed with autism.  She was crushed.  “What can I do?” she asked.  I stared into the phone.  Not much I thought.  “Get him in a good ABA program” was all I offered lamely.  It was all I had. 

She called me again several months later.  “Have you read the book on Autism by Kenneth Bock?” she asked.  I laughed to myself.  I was so deep under water that reading a book seemed like a luxury I would never enjoy again.  We had our plate full with Coleman’s behavior problems, OCD challenges, melt downs, and rigidity.  His issues made finding an appropriate baby sitter a challenge, and so our social life was also limited.  We also had Emma’s diabetes and corresponding doctor visits, busy academic and athletic schedules for both girls, and, with both Billy and I working full time, well, we were barely treading water.  “No, I haven’t heard about it” I replied instead.  She told me briefly about the book, and mentioned she thought it could help with her son.  “You should get the book.  It’s pretty interesting” she said. I hung up the phone and went on the computer to Amazon.  I googled  “Autism and Kenneth Bock” and sure enough the book came up.  “Healing the New Epidemic:  Autism, ADHD, Asthma and Allergies.”  I read the summary and thought about it.  I put the book in my cart and closed the computer just as Coleman began to scream because Emma had shut off the bathroom light. 

Another 6 months went by and I hadn’t bought the book.  It was still in my cart but I kept checking the “save for later” button any time I placed an order.  My friend called again and she casually asked if I had read it.  “Just ordered it!” I lied.  I hung up, went online and ordered it.   In two days the book came, and for the next week, I couldn’t put it down.  I was writing notes in the margins, placing post-its on pages, and I dog-eared so many pages that it would have been easier to dog-ear only the pages that I didn’t find important.  That book.  It single-handedly changed me.      

The book is written by Dr. Kenneth Bock, a well-known physician with more than three decades of experience treating patients via “alternative” approaches in medicine.  His expertise surrounds complex, multi-symptom disorders, including Autism.  His approach to autism begins with a belief that autism is a disorder caused by a combination of lowered immune response, external toxins, and problems caused by certain foods.  The treatment protocol commonly includes nutritional supplements, special diets, testing for hidden food allergies, treatment of intestinal bacteria and detoxification of heavy metals.  Sounds wacky, right?  That’s what I thought too. 

Wacky, but fascinating.  He tells story after story of his patients, explaining in detail his thoughts about their symptoms and his multifaceted approach to treatment.  It’s clear that the treatment process is not easy.  He talks a lot about being like an investigator, testing and examining blood results, testing and treating, and repeating it all again, trying to fix one by one each piece of the complex puzzle.  Later, I heard a talk given by another biomed doctor.  He used this analogy:  think of your body like a high tech manufacturing line.  If even one small part breaks, then the machine isn’t going to work.  Figuring out exactly what isn’t working right and how to fix it takes time.  And trying solutions takes time, because the same solutions don’t work on all kids.  But, the important point is that some solutions do work.  And work quite well, it turns out. This approach to treating autism, when combined with behavioral and educational interventions, has actually ‘recovered’ hundreds or thousands of kids from Autism.  In a great many others, it has led to significant improvements.  

I found it particularly noteworthy that Coleman shared a similar history and experienced many of the same symptoms as the kids included in Bock’s book:

·         GI Issues -Coleman has a very long unexplained history of GI issues, including reflux, alternating constipation and diarrhea.  He was tested for Hirschsprungs Disease at about 6 months of age due to his inability to have bowel movements.  He was hospitalized for a week when he was about a year old due to a 7 day fever and enlarged intestine, the cause of which was never determined.  And due to nausea related to the chemo during the Leukemia, he stopped eating entirely and had a feeding tube placed.  G I issues?  Yeah, we got that. 

·         Gluten/Casein intolerance – the theory is essentially that children with autism cannot completely digest some proteins (specifically those in gluten and casein) resulting in undigested proteins, known as peptides, that pass through the intestinal membrane and enter the CNS.  These peptides have an effect like opiates (morphine) in the brain and nervous system, causing disruption to normal neuroregulatory processes.  Long term exposure can have damaging effects on the developing brain.   I didn’t know if Coleman had this issue, but I knew one thing:  Coleman ate a lot of gluten.   

·         History of high antibiotic use - The possible link between antibiotic use on children with low immunity and autism is something I’ve now read about over and over.  Some – not all - kids with low immunity have a difficult time shedding the toxicity and metal from medicines.  Coleman certainly had more than his share of antibiotics.  He faced many bouts of illness, both test-confirmed (bronchitis, strep) and non-test confirmed (asthmatic episodes, aforementioned GI issues), and was treated every time with antibiotics.  And then there was the oh, lets round it out to three years, of Chemo and steroids.  He has even had lifetime doses of some medications.   He can never, ever have some of the medications he had during those three years again in his life because, before he was three years old, he had already had the lifetime allowable dose.  Seriously.  And clearly, since the entire chemo process is to kill of the cancer cells, which at the same time kills off healthy cells, yeah, you could say he received those drugs during a low immune time in his life.  And this is not to mention all the radiation.  To his head.    I was starting to now wonder what effect all of this had on Coleman and if any of it contributed to his autism.

·         Yeast Overgrowth:  I wasn’t sure if Coleman had this, but I was willing to wager a substantial amount of money that he did.  Yeast is present in all of us, and is considered commensal (neither beneficial nor harmful).   But overgrowth of these organisms can have many detrimental effects, including asthma, allergies, eczema, complications in the GI tract, and broad immune suppressive effects.  There have been cases when clearing yeast overgrowth alone is game-changer in terms of progress for kids on the Spectrum.  The first case involved a young girl with autism.  Her parents took her to the doctor for a white film they could see on her tongue.  It was thrush and the doctor ordered Nystatin.  As expected, the girl’s thrush cleared but remarkably so did her autism.  Word among the biomed community spread quickly and soon many biomed doctors began to add this to their regimen – test for yeast, and if higher than normal, treat it.  Coleman had countless cases of Thrush during his chemo days, and still we get the ‘white tongue’ from time to time.  He also has a substantial amount of eczema on his body and arms.  And we fought cradle cap on his head until he was five or six years old.  All signs of too much yeast. 

·         Sudden onset OCD:  Yup again on this one.  Summer of 2012.  It was really when Coleman changed from his easy going, happy little guy to suddenly needing to touch every corner, walk a certain way, go through a certain ritual, repeat exactly what was going to happen in the next hour (again and again) and it was the first time he really hit anyone.  It started suddenly and at first, we thought it was another quirky way of his.  But it very quickly escalated.  His need to touch, move, stand, and repeat things became intense, and the inability to do so set off tantrums and meltdowns, the likes of which we hadn’t seen previously.  It was also the start of problems at school.  Upon his return that September, he began to aggress against teachers and aides when he couldn’t fill his OCD needs (i.e. No you can’t touch every plug outlet as you walk down the hallway).  When the school first told me about his aggression, I honestly did not believe them.  He doesn’t act like that, I thought.  That is not him.  But it had become him.  Seemingly overnight.

There were so many parts of the book that I identified with, I couldn’t possibly list them all here.  I kept stopping and saying to Billy “You have to read this.  You will not believe how much these kids are like Coleman.”  I couldn’t stop thinking about the book after I had finished it.  Could this possibly be true?  The man was a well-respected doctor.  But still.  It really had me thinking.  What if?  I went online and found hundreds and hundreds of stories of people that followed the biomed approach whose children had ‘recovered’.  For many more, they reported major improvements.  And for a great many, they were still hard at work trying.  It didn’t take long to decide.  Within a week of finishing the book,  I made the call to Bock’s New York office.  I took the first available appointment, 4 months later.  And then I waited and prayed.

When You Know

When You Know

A friend confided in me recently about her concerns over her brother’s son.  She was trying to not be intrusive, but every time she saw him she felt like something was just off.  My friend has kids of her own, so she has seen typical development and felt like her nephew wasn’t hitting milestones as he should.  He wasn’t responding to his name, wasn’t playing like most babies do, wasn’t interested in crawling.  She was concerned, and wanted to say something to her brother.  “What should I say?” she asked.  I wasn’t sure, but the entire conversation brought a flood of my own memories. 

Billy and I had taken the girls to Florida and Coleman had stayed with my family.  When we returned less than a week later, the things I had been noticing slowly over the prior months now seemed blatant.  For quite some time, I had noticed that he didn’t seem to respond when I called his name.  He’s just very focused on what he’s doing, I reasoned.   And then I observed his lack of interest in other kids.  He’s independent, I silently cheered.  And then I noticed that he wanted to watch just a tiny section of a single show, over and over again.  And then, that he seemed unmotivated to crawl around and explore.  Even amid a pile of toys.  He’s a thinker, I told myself.  He’s going to be brilliant someday.    And then I noticed how much he perseverated on that one toy.  Every child has a favorite toy, I told myself.  But then I quietly noticed that even with his favorite toy, he was fascinated only with spinning the wheels.  And that, in fact, he liked to watch a lot of things spin.  And that he liked to line things up.  Lots of things. 

It takes a lot, really, to get you to say it out loud the first time:  “Do you think this is normal?”   And then you are defiant and defensive when whomever you have asked says it is not.   “What do you mean?  You just don’t see him enough” you practically yell back.  You spit back to them every rationale, every stretch of a reason you’ve been telling yourself over the past year to explain his behavior.  Your face is red and hot and you are irrationally angry.  Your friend politely tries to back off, but it’s too late, it’s already out there.  The brief conversation ends.   But later that night, when you are alone with your boy, you watch him more closely, willing him to do something that looks ‘normal’.  You lean over to him, and whisper  “Say Mommy, buddy. Say mama.”  But he just stares at you.  “Hey, pal, look at this ball!  It’s so fun to roll like this!!” and you roll it toward him but he just watches it roll and looks away.  And you pick up his favorite toy train and run it along the floor, saying “Chooo chooo!!!   See the train racing by!” and you hand him the train saying “You try it!” and he takes the train but turns it over and spins the wheels with his thumb.  And you know. 

Be gentle with your family and friends when you suspect their child is delayed or having trouble.  Because even when you know, it’s really hard to hear.    And having it confirmed by a formal diagnosis is no picnic either.  Worse still are the days and weeks that follow a diagnosis, because there is so little support medically, that once the news settles in, you are struck by a desperate feeling of having no idea what the hell to do.  And here, I think, is where traditional medicine begins to fail us.       

There is no standard treatment path in place that guides you along this vast, complicated land of Autism.  There is no annual appointment, no at-home follow-up, no clinic follow-up, not even a phone-call follow up.  At your feedback session after the initial testing, you are told gently that your child has Autism.  You are urged to seek an educational program for your child based on ABA (Applied Behavior Analysis) with a substantially separate class.  And that is all.  It is a rather brief meeting.  Basically a pat on the back, tough luck Chuck, and you are on your way.  Autism is a life-long, debilitating illness with multiple biological and neurological comorbidities.  And you are given a 15 minute conversation about it and that is it.  It’s no wonder parents are nearly suffocating under the weight of trying to raise an autistic child.  No one knows what the hell to do.  The parting words “get in an ABA program” are their only hope.  So that’s where most people start.  It’s also where most people end.  It would have been the end for us too, I think, if I hadn’t read this one simple book.  But I did, and that one simple book started a pretty big revolution over here. 

School

School

We finally, reluctantly, made the decision to move Coleman to a new school.  He transitioned at the end of last May, and now, nearly a year later, he is adjusted and doing well.

The change was hard for him, hard for us, and I know hard for the wonderful folks he left behind.  His last day of school at East is one I will forever cherish. 

I had asked his teacher at East to make for him a social story about the going to a new school.  She did it perfectly, and sent it home the following day.  That night, I read through it alone and cried.  “In 10 more days I will be going to a new school.   I will miss my friends and teachers at East school but I will have new fiends and teachers at my new school.  My new teachers names are Maggie and Sam.  In Ms. J’s class I did work and played with puzzles.  In my new class I will do work and play with puzzles.  My new school will be great!”   There were pictures of his current school and his new school, pictures of Ms J and the kids in his class, and a picture of his new teachers.  In my head I could see Ms. J putting together the pictures and the story, trying her best to make this confusing change simple for Coleman.  I know she cried too, putting it together.

We read him the social story every day, several times each day for the 10 days leading up to his last day.  He was somewhat uninterested as we sat going through it and I wondered if he understood what we were trying to tell him.  I realized later that he hadn’t. 

For his last day at East, I had asked if I could come in early to gather his things.  I wanted to bring some snacks for the kids and some small momentos for his teachers.  I also was worried about how he would be on that last day so I wanted to be around.  And I really wanted to say goodbye and thank you to everyone.  I arrived at the school around 12:30, and went to his classroom.  Normally a quiet place, each child working with a para or an aide, the room was a bustle of activity – I could hear the commotion out in the hall.  As I entered his class, I saw a bunch of kids gathered around Coleman, laughing and talking to him.  I went over to Ms. J.  She said a lot of the kids from the other grades had been stopping by to say goodbye to Coleman.  Coleman loved it.  He was smiling away at all the kids, albeit confused about why they were all saying goodbye and good luck.  As soon as that group left, more came.  And again after that.  And in between, teachers and aides and admins floated in.  “It’s been like this all day” said Ms J.  Just about everybody who knew Coleman or who had worked with him had stopped by.  It was as loving and heartfelt a tribute as I could have ever hoped for.  And while it may have all been lost on Coleman, it certainly wasn’t lost on me.   These people who had taught and cared for Coleman for the last 8 years, who had made accommodation after accommodation for him throughout the school, who had watched him grow from a tiny bald 3 year old with cancer to the small but strong 10 year old he was now, had all grown to love him.  It was a tough day for everyone. 

He started the following week at his new school.  Please, God, let this be the right decision, I prayed. The first day went amazingly well.  And when we got home, I understood why.  “Go see Ms. J tomorrow?” he asked with a big smile.  “No buddy, remember you’re going to a new school now” I said as I reached for the social story.  His hand grabbed mine before I reached it, stopping me.  “10 more days?” he asked.  He asks this any time he wants to know when something is ending or coming up.  For example, if he knows he has gymnastics coming up, he’ll ask “10 more days then gymnastics?” and I have to just put in the correct number. “3 more days to gymnastics!” I’ll tell him.  So when he said “10 more days?” I knew what he wanted:  how many more days until he could go back to East.  It was so sad.  I knelt down beside him and said “we aren’t going back to Coley’s old school.  Coley has a new school now.”  He just stared at me, and then said “10 more days?” 

The next day was colossally worse.  His new school was trying to break some OCD behaviors (rightly so) from the start, and Coleman figured out quickly that this was the real deal.  The aggression and tantrums escalated as expected.   By the end of the week, Coleman was exhausted.  He stood in the playroom staring at the T.V.  I walked in and knelt beside him.  “10 more days?” he asked as he started to cry.  Oh God, the pain.  I hugged him and tried not to cry too, and said only “I’m sorry you miss your friends.  I know this is hard. I love you” and I hugged him and he cried gently in a way I had never heard before. 

Things, thank God, have improved since then.  He is wonderful, has completely adjusted, and likes his new school.  It was the right change, but it was goddamn hard.  Coleman still remembers his friends from East, and we hear their names in his scripts every now and then.  In a few weeks we’ll be doing an athletic program for special needs kids and some of those kids and Ms J. are going to be there.  I told Coleman about it a couple of days ago,  and he’s been excited ever since.  Every couple of hours he smiles and says “10 more days for Ms J?”  J    It’s going to be a nice little reunion. 

Coley's First Year in School (Pirate for Halloween)

Coley's last day at East

The Bike Ride

Ok, so now finally to an update about Coleman!!!

I’ll start where we left off last year, just after my mother’s passing.  I can’t believe it will be a year this month that she is gone.  It feels so much longer.  I miss her every single day.  Death is difficult for most of us, but we understand it’s place in the great circle of life.  For Coleman, and I assume many kids like him, he simply doesn’t understand the concept of death or its permanency.  I never told him Nana was gone – I had no idea how to possibly explain that to him.  For a while, I was nervous whenever he saw a picture of her, afraid that he would ask where she was and demand for her to come over.   This happened occasionally while she was still sick.  When we would get together with my brothers and sisters, he would look around and ask “Where’s Nana?”  I tried to explain:  “Nana is sick.  She is in the hospital right now.”  “Go get her?” he would ask.  “She can’t come today, Coleman.”  And then again “Go get her?” which escalated into demands, yelling and crying, begging us to go get nana, to please get nana, and where is nana, again and again.   That first time, when he became upset at her absence, it was the first time I considered the possibility that she might not live to ever come home again. 

Although she is gone from us in a physical sense and I miss her dearly, I have never been more sure that she is with us spiritually.  I can practically see her laugh at some of the crazy things we do for Coleman, and watch her shaking her head in amazement.  And when I doubt things, or hit a wall and think this is it, that things for Coleman will just not get better, I can hear her confident voice, feel her gentle push, urging me along, yes, yes, it will get better, you can do this, HE can do this.  I need her now like this more than ever.  And I think she knows it, because she wasted no time at all in helping me, starting on the day of her funeral.    

It was beautiful day, sunny and cool, just as she would have liked.  After the mass, we met friends and family back at a hall to celebrate her life as good Irish folks often do.  Sue kept Coleman at home and brought him to the hall after we had a chance to catch up with some old friends.  Coleman wanted nothing to do with a hall, too many people, too loud and unfamiliar, and he was dragging my hand to get out only minutes after he had arrived.  So we left and arrived to the empty quiet of our house.  It felt unfamiliar and uncomfortable, like none us knew what to do next.   “Want to go for a bike ride Coley?” I asked.  Coleman loves bikes.  His favorite bike is a Taga bike that my mom had bought us a couple of years ago.  A fancy European model that was ridiculously expensive, it’s shaped like a tricycle for adults, with the traditional seat for me, and a big seat on the front for Coleman.  He loves to ride up front, especially to go fast, which is hard for this out-of-shape mama.  J  Today, I wasn’t talking about the Taga.  I was talking about his real bike.   He hadn’t learned to ride it yet, simply could not grasp the concept of continuous motion.  I spent many days, summer after summer, crawling along the ground, pushing his feet around in a circular motion, showing him how it was done.  I tried Velcro straps, strapping his feet to the pedals, but he just couldn’t do it.  He would push for half a stride, and then stop.  I would grab hold of his foot, move it forward and push him again and, half a stride later, stop again.  Time after time, to no avail.   He just didn’t get it.    

But today, on the afternoon of my mother’s funeral, I wanted to get out of the house.  So I dragged out the bike and placed it in front of Coleman.  I then grabbed his helmet, knowing this would be the first obstacle.  I approached him with it, saying in a happy sing-songy way “First we have to wear our helmet to be safe!”  And do you know he put that dang thing right on without a fuss?  Never, ever would he wear it before, not even on the Taga.   Well, I thought.  It must be from skiing last year.  And that was that. 

We moved toward the bike and l lifted him onto it and wheeled him out to the street.  I knelt to the ground and put his feet on the pedals.  As I moved his foot and the pedal, I said  “See push this foot down and….” And nothing because that little bugger took off!  Pedaling like he had been doing it for years.  I shit you not.  I screamed back to the house for the girls and Billy to come see, and we all grabbed cameras and videos and shrieked over his amazing skill.  And then I felt a chill.  Not a cool breeze kind of chill.  This was my mother at work, I suddently sensed.  I was sure of it. First the helmet, and then the bike.  I could just picture her, pushing people out of her way so she could see what was going on down here, grabbing hold of the magic wand or whatever the heck those angels use, and simply shaking it down on Coleman like Tinkerbell shaking pixiedust all over Peter Pan.   “Enough of this. I’m here now” I pictured her saying.   And just like that, Coleman learned to ride a bike. 

We rode every day from then on, even into the very cold days of winter.  He became stronger and better at it.  We have a route to the mailbox on Main Street which is about a mile from our house, and we ride multiple times on the weekends.  He loves it. It is by far my favorite thing he learned to do this year.  And every time we ride, I think of my mom.  Gone in flesh, but so very present in spirit.