Category Archives: Stem Cells

Stem Cell Treatments

“You thought my autism was hurting me and that you needed to remove it, but you did not understand that it is a neurological difference and fear caused you to behave with desperation.”  ~  Emma on the topic of the three stem cell treatments we did in 2010

Every now and then people find this blog through a site that promotes stem cell treatments in Central America.  In our long and twisted journey since Emma was diagnosed with autism, stem cell treatments were something we once hoped would help our daughter.  It is a decision I deeply regret.  People ask me whether I think it may have helped her.  I do not.  People have wondered whether the tremendous strides Emma has made are not directly related to those stem cell treatments.  They are not.  I can say this with assurance.   If you want to learn more about how Emma is communicating, click on this link.  The stem cell treatments put Emma’s life in danger.   We have no way of knowing what we may have exposed her to because of those treatments.  For the rest of our lives we will not know if the stem cell treatments harmed her.  We will never know and that is a fact we must live with.

In April of 2010, we believed anything was worth trying if it would help our daughter.   Just four years ago, I believed being Autistic meant a life of untold misery.  Autism was a list of deficits.  At the time, I doubted whether my daughter would be able to learn to read and write, let alone speak in a conversational manner.   I had no idea what my daughter was capable of.  I had no idea that she already knew how to read.  I know this now because she has told me through her writing.

We took Emma to Costa Rica and later to Panama for three rounds of stem cell treatments despite being strenuously urged not to go by a team of stem cell researchers out of Harvard.  We were cautioned about the experimental nature of this procedure.  We were told it was risky, dangerous, highly invasive, and yet we made the decision to take her anyway.  We did this because we loved our child and, at the time, believed anything we tried was worth it, if it might “save” her.  (I use that word purposely because this was what we once believed.)  We believed we were giving her a chance at life, we believed, if we did not try this, we would regret it.  We held out hope that maybe, just maybe this would help her communicate and thereby give her the opportunity to form friendships.    

I’m not going to go on a rant about all the misinformation we were given by well meaning professionals, educators, medical experts and pretty much every single person we came into contact with on the subject of autism and our daughter, all of that is pretty well documented throughout this blog over the last year and half, but I will say this, our response to autism and what we believed that meant for our daughter was not unique.  We knew of a great many parents who believed just as we did, that any treatment was better than doing nothing at all.

This blog began as a result of those stem cell treatments.  I never thought more than a handful of people would read what I was writing.  This blog was a way to document the changes we hoped we would see because of the stem cell treatments, a treatment that is not allowed in the United States, a treatment that has since been outlawed in Costa Rica as well.  We believed we were doing a good thing.   For those of you who never contemplated such drastic measures, I understand how incredible this must sound.  For those of you who are Autistic, I can only tell you how sorry I am that this was what we once believed.

We all make mistakes.  Some of us have made terrible ones; things we cannot undo, take back or cancel out with an apology, no matter how heartfelt.  What I can do is continue to learn, hope to do better, and do all I can to counter that list of deficits so commonly attached to an autism diagnosis, while signal boosting Autistic people’s words, including my daughter’s.

Last night Emma and I discussed those stem cell treatments from four years ago and she wrote the words I opened this post with.  When I told her that if I could take those treatments back, if I could cancel them out, I would, in an instant and without hesitation.   She then wrote, “Many parents have not loved their children as much as you.

This isn’t about forgiveness, I know she forgives me, this isn’t about publicly beating myself up, this isn’t about me learning to forgive myself, this isn’t about me at all.  This is about misinformation, where that misinformation leads us and the inherent problem with speaking about autism as a “medical disorder” as opposed to a neurological difference; a difference that carries assets and deficits just as non autistic neurology does.  This is about oppression, segregation, prejudice and how that plays out in every aspect of autism, autism research, autism treatments, biomed interventions and almost all of the various autism therapies that currently exist.

“Put it on the blog!” Emma said, after we talked about all of this.  

“Really?  You want me to put this on the blog?”

“Yes,” she said and then she leaned over, gave me little kisses and added, “Aw… sweetheart…”

Emma walking among ruins in Panama ~ 2010

Emma walking among ruins in Panama ~ 2010

The Magic of Connection

At a certain point during Richard’s radio show  the other night, where he was featuring Moms, he asked me about those years when we were determined to find a cure for our daughter.  I didn’t want to take up time on the show to talk about all of that because there was so much to cover, but also because it makes me really sad to talk about it and I also know it is hard for many of my Autistic friends to hear, two of whom were guests on the show and many more who I knew were listening!  I try hard not to live in regret, but I’ve done things that I really DO regret.  Things I really do wish I could go back and erase and do again differently.  More than anything, all those therapies and bio medical treatments we did, fall into that folder labeled “Things I wish I could do over.”

My reluctance to talk about all of this the other night on the radio wasn’t because I don’t think it’s important as much as it’s really painful to talk about and I know, for many of my friends, people I love dearly who happen to also be Autistic, it is very painful for them to hear me talk about those years, all those years when I was so intent on curing my daughter.  It may remind them of their own upbringing.  It may bring up all those devastating feelings of being unworthy or that they were somehow damaged or diseased, or any of the other hurtful words people use when discussing autism, that hurt them.   So to my Autistic friends, please skip down to the final paragraph.  The last thing I want to do is cause more pain and suffering to those I love.

At the time, after Emma’s diagnosis was given, I believed autism was something that could be “treated” the way one treats a disease.  Only it isn’t a disease.  But at the time I thought things like vitamin supplements , homeopathic remedies, therapies like ABA and diets could actually remove the “autism”, that these things would somehow transform her brain from an Autistic brain to a non Autistic brain.  I know it may sound over the top, even ridiculous to many, but at the time, I wanted to believe and so I bought into the idea that autism could be ‘removed’.  The concept of someone being pressured into learning to “pass” as non Autistic and the massive emotional and physical toll that inevitably takes, was not something I knew about at the time.  It never occurred to me to wonder what the fallout might be or how my own child’s self-esteem might suffer as a direct result of what I was doing and saying.

Over time, as I kept trying different things, which culminated in going to Central America for stem cell treatments, I continued to believe, being the very best mother I could be, meant doing everything I could to “remove” her autism.  I believed all those words that are used to describe autism: disease, affliction, epidemic and crisis.  Autism was BAD.  Autism meant all kinds of things and none of them were positive or beneficial.  So that’s what I pursued – a cure.  And I pursued a cure with the same dogged persistence I now apply to changing how autism is viewed by others.  Where I once was determined to change my daughter, I am now determined to change society’s views of autism and, it must be added, society’s views of Autistic people.

You cannot talk about autism without talking about Autistic people.  Yet people do all the time.  They talk about autism as though their words will have no affect on those who are Autistic.  But you can’t do that. When we talk about autism we ARE talking about our Autistic children.  We ARE talking about our Autistic friends.  We ARE talking about Autistic people.  What we say, how autism is depicted, DOES impact those who are Autistic .  It does directly affect how others then treat them.  To pretend that all the derogatory language used has no direct effect on Autistic people is ignoring that fact.  And this is where all of this no longer is just about my daughter and the risks I took and the impact my actions have had on her.  This is about something far bigger than any one person.  This is about a segment of the population who are Autistic and the fallout they must cope with from all of us talking about them as though it wasn’t about THEM, but instead was about a word – that word being – Autism.

Toward the end of the radio show, Lauri Swann spoke of how her son, Henry developed a relationship with his mentor Tracy Thresher and how transformative that was for him.  I reflected on how magical it was for Richard, Emma and me to visit Lauri and her family during the screening of Wretches and Jabberers this past April.  We reminisced about the evening before the screening, when we all went back to Lauri and Russ’s home and everyone sat around their dining room table typing to one another.  The only word I could come up with to describe that visit was “magical“.  And it was, because like the Autcom conference last fall and the Syracuse conference this past winter, being in an atmosphere of inclusion, where every single person is treated with the same respect as anyone else, where all are treated equal, is magical.  How did we move so far from those words in the Declaration of Independence ~ “We hold these truths to be self-evident, that all men are created equal”?  How did we get to this other place, where an evening like the one I’ve just described is considered out of the ordinary?

Now, sitting here writing this post, I am thinking about two more magical days and evenings when Ib came to New York City and stayed with us.  Ib is like family.  My children adore her.  My husband adores her.  I feel honored to know her, let alone call her my friend.  I don’t know how to talk about all of this when lines are drawn, when words are used that separate and divide.  I can’t do that and I don’t want to live in a society that does.  What people do not understand fully, or cannot completely appreciate, is this – when we stop dividing people into categories of us and them – we open ourselves up to the experience of being united, of really feeling that indescribable magic of connection.   The beauty of belonging.  The joy of interacting with our fellow human beings and rejoicing in our diversity.  There IS magic in that.  This is what I wish all human beings have the opportunity to experience.  This is what I hope I will live long enough to see occur on a grand scale.

Henry & Tracy during our magical visit with Lauri’s family

Henri & Tracy

Adrianna, Amy Sequenzia, Em & Me
Adrianna, Amy, Em and Me

Nic & Ib on the High Line

Nic & Ib

On the Spectrum

I was asked recently why I am trying so desperately to overcome autism.  It’s a valid question and it made me think about the challenge of writing about one’s child in a way that honestly captures that child with all their complexities.  A week or so ago I wrote in my post entitled A Cure – “Emma cannot function in our world, she is not mainstreamed, she cannot take a shower, wash her hair and dry herself off without support.  We are not discussing nuances here.  We are talking about a child who is more than “quirky”.  My husband, Richard and I love quirky.  Quirky is GREAT!  We’ll take quirky.  But that’s not what Emma is.”

To me, that summed up why we continue to search, why we continue to try various things, but it does not adequately describe Emma.  Emma cannot function in our world without hands on support.  We cannot have a conversation with her or ask her questions.  I am still trying to capture Emma on video and post some clips on here, but haven’t had the time to do that yet.  The question I began this post with, made me realize that for someone reading this blog they cannot know her through my writing.  Perhaps one gets a sense of her, but there’s too much left out, too much I don’t think to mention, the cadence and inflections of her speech, the words, which I can understand, but which may not be understood by someone else.  I try to give an accurate portrait of her, but in the end, it is just that, an interpretation and not representative of the whole.

When we first received Emma’s diagnosis I was determined to find a “cure”.  I felt sure that I would find one too.  (Hubris?   Arrogance?  Ignorance?  Stupidity? Denial?  All of the above?)

After those first few years I realized I might not find a cure for what ailed Emma.  And after another few years and three trips to Central America for stem cell treatments under our belt, a “cure” seemed more and more elusive.  I have come to accept that.  Perhaps more importantly, I am less focused on the miracle of a cure and more focused on pushing Emma to expand her world.  There’s a balance we have tried to achieve with Emma.  We try to follow her lead whenever possible, but we also encourage her to stretch and do things beyond her comfort zone.  Our most recent attempts to expand her diet is a case in point, her literacy and math program are another.

Which isn’t to say that I don’t continue to research and do everything in my power to find treatments to help her.  I am convinced Emma’s digestive issues are exacerbated by her environment – the foods she ingests, the air she breathes, the water she drinks.  This Friday I am taking Emma to a doctor who has worked with hundreds of children on the spectrum.  He and I spoke on the phone yesterday for over an hour, going over her history, her GI issues (inflammations and ulcerations), chronic constipation, recurring strep throat, porous teeth, cracked heels and limited diet.  While a few years ago, I would have eagerly anticipated this appointment with the same degree of excitement the devoted view a visit from the Pope, I no longer do.  I have come to see all of these people, no matter what letters may follow their name, with tempered interest.

Last week Emma’s school bus matron told us Emma refused to buckle her seat belt and when the bus matron tried to help her, Emma kicked her hard in the chest.  We immediately went over with Emma the behavior we expected from her.  We rehearsed buckling her seat belt and made sure she had her ipod and ear buds with her so she could amuse herself once she was seated.  We went over the importance of not hurting another person.  We tried to consider what sort of support she might need to help her control herself.  We are lucky in that Emma seems to have understood and has not struck nor tried to get up from her seat while on the bus since.

As we waited for her bus this morning, I coached Emma, “Emma, it’s nice to say good morning to people.  She’s a nice lady and saying – Good Morning – will make her smile.

When Emma boarded the bus this morning she said, “Good morning, nice lady.”

The bus matron beamed.

There are many people with an autism diagnosis who are on the “mild” end of the spectrum or fall in the “gifted” category of Aspergers or are considered “high functioning”.  These children are often mainstreamed or learning at grade level or above.  And while they have tremendous hurdles, often requiring support into their adult lives, they occupy a different level of hurdles from those who, like Emma are moderately autistic.

I had a friend whose child was unable to walk or even lift his head.  He, too, was diagnosed with autism, though severely so.  That child faced developmental and physical problems far beyond anything Emma has had to deal with.  For me to compare the two would have been ludicrous.  At this point my goal is to get Emma to a higher level on the spectrum.

For more on Emma’s journey through a childhood of autism, go to:   www.EmmasHopeBook.com

Dinner With The President – Autism

I received a form letter from Vice President Joe Biden yesterday.  It was one of those mass emails one gets, but rarely reads.  For some reason I glanced at it and read that the president will be having dinner with one person who makes a small donation of five dollars.  Their name will be thrown into a hat and one name will be drawn.

I thought about what I would say to the President were I to have the opportunity to have dinner with him.  And of course I knew what the answer was without hesitation.  I would speak with him about the rising numbers of children diagnosed with autism.  I would direct him to the countless news stories regarding the rampant abuse of those same children and adults living in group homes and institutions.  I would ask him to help set up communities where individuals with autism would have more control over how they lived, allowing them to pursue their interests, encouraging them to follow their dreams.  I would tell him about our trips to Central America with our daughter, Emma for stem cell treatments.  I would encourage him to put more funding into stem cell research, umbilical cord stem cells, using the patients own stem cells, and any other form of stem cells that might prove viable in restoring the lives of hundreds of thousands, even millions.

As I continued to think about all the things I wanted to say and ask for, in the name of autism, I thought of the families like mine who have been affected.  I don’t just mean on an emotional level, but financially as well.  A diagnosis of autism is devastating to any family financially.  We have chosen to pursue a more aggressive route than many can or want, but any family, even those who have not taken their child to foreign countries for stem cell treatments has found the cost of caring for a child with autism staggering.  For those who have little or no resources, who have to rely on social services to help them, who cannot afford to have a caregiver come to their home to give them a break, they live in a world starkly different from those with similar financial constraints who have neuro-typical children.

So Mr. President, on the off chance my name isn’t chosen and I don’t have the opportunity to sit down with you, can you please help galvanize the medical community and make autism a priority in research, can you look at what we’re doing when we cut so much funding from our already overwhelmed schools, can you earmark autism as something we need to find answers to?

To read about the genesis of this blog and Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

Some thoughts

I have school photos of our two children on my desk in my studio, both are smiling, their blonde hair, much lighter than it is now.  Emma, like her older neurotypical brother, Nic, is looking directly at the camera.  Her two front baby teeth are missing, the adult teeth yet to show themselves.  It is one of the rare photos from that age when she was just five where she is looking at the camera.  I have spent hours staring at that photograph, as though if I looked long enough, some part of her mind will reveal itself to me.

I try to apply logic or project my own emotions onto Emma in explanation of her behavior and find I am wrong time and time again.  When I look at Emma’s brain scans and see the lack of symmetry, the bright colors, which should be dark, like a strange Rorschach test gone wildly awry, I try to detect patterns.  I try to make sense of what I’m seeing, but cannot.

“Emma’s brain is not like ours,” I remind my son, Nic in times of upset.  She does not think as we do.  She is decidedly “other.”  I feel as though I am a perpetual intruder in her life.  At times welcome, just as often not.

The stem cell treatments, like the myriad treatments that came before may not help her in the end.  Or they may not help her to the degree we would like.  Emma may not progress enough to allow her to live an independent life.  But I do not want to look back on these years and feel regret.  Regret we might have done more.  So we continue to wait and watch.

And while we do so, we work on her handwriting, her receptive skills, sequencing, her enunciation, we are teaching her to use a typewriter and we read to her.  It was suggested to us that we read books written for children that are non-fiction instead of the usual array of stories available to beginning readers.  At first I was reluctant to give up the Olivia books, which she took such pleasure in, Dr. Seuss, Go Away Big Green Monster, books Emma has been looking at and heard hundreds of times and which she continues to hear at school.  But at home out came the Learning To Read series about Pompeii, The Titanic, Dolphins, Hungry Plants, then I found other books written for children on such topics as Balto and Helen Keller.   She loves all of them.  She requests them, has asked me to read some of her favorites over again.  I am amazed.  But if I think about it, it makes perfect sense.  For a child who takes things so literally, non-fiction is a perfect fit.  The stories I am reading are for her age level and she enjoys them, which fills me with hope and happiness.

Just because Emma doesn’t process things or communicate the way we neurotypicals do, doesn’t mean she’s not intelligent.  Emma is exceedingly bright.  It’s figuring out how to tap into that intelligence in a way that speaks to her, captivates her and interests her – that’s the challenge.

Exhaustion

The vicissitudes of our daily life with Emma require a certain degree of hope in order to stave off the depression lurking in the background.  I need a plan of action, something I can refer to when I am tired, when my defenses are down, when I feel my grip on that tenuous thread of hope beginning to loosen.

At the moment I am reading about RPM – Soma Mukhopadhyay’s Rapid Prompting Method for autistic children, which gave her non-verbal son Tito a voice.  I have watched the videos, have read her book and am now rereading the book while taking notes.  I am on a waiting list to go with Emma to Texas to have a four-day session with Soma.  In addition I have just started reading Dr. Howard Shane’s book – Visual Learning.  I need to be alert while reading as the subject matter is dense and I have difficulty taking it all in.

Emma continues to wake the entire family at all hours of the night, resulting in all of us being exhausted, relying on caffeine to get us through the day with no end in sight.  Poor Nic, who is not allowed to drink caffeine, has to muddle through as best he can.  It is certainly affecting his ability to concentrate at school.

“We don’t have a plan,” I said to Richard this morning.  “We need a plan of action.”

But the truth is, I need an infusion of hope.  Like an IV – hook it up and let it drip into my veins.  Hope is the thing, more than anything else motivating me to keep pushing ahead.  Hope is the lens through which the world can seem grey and dull or bright and cheery.  I need hope.  So I think about the phone call Richard had yesterday regarding Emma’s last QEEG.  We had the brain scan done the day before we left for Panama for her second round of stem cell treatments.  Our conflicting schedules have made it impossible to meet to go over the results.  Richard is meeting with one of the doctors this Friday.  The doctor told us he thought there were some interesting things going on with that last scan.

So we wait and we hope.

Emma on the Telephone

I must begin this post by stating the obvious.  I am not a scientist.  Biology was the one class in high school I almost failed.  In fact I had to go to summer school in order to restore my grade point average.  In both undergraduate and graduate school I avoided all things science by first going to Parson’s School of Design and majoring in Fashion Design and later did my graduate studies in Creative Writing.  Science courses did not play a large role in either of these majors.  That I now find myself steeped in science, stem cell research specifically, is more than a bit ironic.  And I have to say my avoidance of science is not serving me well in these on-going conversations with some of the most highly regarded stem cell specialists in the country.

Tuesday Richard and I had more disheartening news regarding the stem cell treatments Emma underwent.   We spoke with another stem cell specialist.  He told us if the donated umbilical cord blood from which they harvested the stem cells was from a male, then she could develop troubling complications as she reaches puberty.  Another specialist we spoke to an hour later refuted this claim.  I will not pretend to understand or repeat all that was told to us, suffice it to say, the news was not good.  On an optimistic note, we are learning a great deal even if I am unable to articulate all of it and there are some very positive things happening on the stem cell front in this country, just not so much with autism.

Richard and I are scheduled to speak with several other stem cell and autism specialists within the next few days.  In the meantime we are doing our best to manage our fears.  And it really does come down to just that – management.   I allow myself a specific time frame, say five minutes, in which I let myself think every frightening thought and then I tell myself – okay.  Time’s up, you have to think about something else.  As an entrepreneur, there is always work to be done, so this technique works well.

I am ending with a scene from yesterday afternoon.

Emma returned home while Richard was on another phone call.  Emma patiently waited a minute then went to his computer to watch a youtube video of the Beatles singing Happy Birthday.

“Emma, I’m on the phone you’ll have to wait,” Richard said.

“Have to wait,” Emma said, turning the video off.  She stood in front of the computer waiting.

“Hey Em, it’s Geneva, do you want to talk to her?” Richard asked, hoping to distract her.

“Yes!” Emma said, taking the phone from him.  “Hi Geneva!” Emma said.

“Hi Emma!  How are you?” Geneva said.

“No, not going to see Geneva on the airplane,” Emma said, shaking her head.

“No you’re not going to see me on the airplane…” Geneva began to say.

Emma interrupted her and laughed, “That’s so silly!”

“But you’ll see me when you get back to New York,” Geneva said.

“Okay.  Bye Geneva!” Emma said brightly and then handed the phone back to Richard, before turning back toward the computer.

“Not yet, Em.  You have to wait til Daddy’s off the phone,” I reminded her.

“Wow!  That was the longest phone conversation Emma’s ever had with anyone,” Richard said.

“Yeah, that was great,” I agreed.

“Hey Emma, do you want to talk with someone else?” Richard asked, holding out the phone to her.

Emma nodded.  “Hi,” she said.

“Hey Emma!” Joe’s voice was heard to say.

“Hi Joe!”

“Is your stomach still hurting?” he asked, referring to the 24 hour stomach flu she just had.

“Yeah, bye Joe!” Emma said cheerfully and then placed the receiver back in the cradle.

“Em!   Your stomach doesn’t hurt and you just hung up on Joe! ” Richard said.

Emma gave him an impish grin and began to laugh.

“You want to listen to your video, don’t you?” Richard said, laughing.

“No you cannot hang up on Joe!” Emma said, giggling.  “Now watch video?” she added quickly.

“You hung up on Joe so you wouldn’t have to wait any longer, didn’t you?” Richard said.

“Watch video?” Emma said, grinning.

For more on Emma’s therapist, Joe go to:  http://www.emmashopebook.com/?p=615

The Journey Continues

Many concerned people have contacted me asking what’s going on, so I will try to explain the recent course of events.  But before I do so, I just want to say I am extremely conflicted by what we have been told to date and by the opinions we have recently been given.  Unfortunately this represents the inherent problems with autism.  One is given a diagnosis based on observation and by the anecdotal evidence provided by parents.  There is no blood test, no x-ray by which a diagnosis is made.  No one knows what autism is, no one knows what causes it and no one knows how best to treat it.  There isn’t even one thing (whether a drug, a therapy, or any other kind of remedy) that everyone agrees will help.  As parents of an autistic child struggling to make sense of all the opposing opinions, it becomes a formidable task to wade through the copious amounts of information, opinions, articles and books.  We are continuing to do our best to make sense of all we are hearing, reading and learning and will continue to keep posting as we gather more information.

To give a summary of what has happened in the past week – through a series of unrelated incidences, Richard was put in touch with the two Drs. he and I referenced in the past two posts.  They voiced their deep concerns with the stem cell treatments we have been doing with Emma.  They gave an example of a boy who evidently developed tumors as a result of stem cell treatments he received in a third world country.  I do not know any more details.  We have, since our initial conversation with them, been put into contact with a number of other professionals in the field of autism and stem cell research.  Richard and I are doing all we can to get as many opinions from different researchers and doctors who specialize in autism and stem cell research.

Last winter when we began looking into stem cell treatments, wondering if it might help Emma, we spoke with a number of doctors who felt it was worth a try.  The two doctors who have been following Emma and meeting with us over the past few years were in the process of putting together a group of 40 autistic children to take to the Costa Rican clinic before it was closed.  They had funding in place, which has since fallen through.  These two doctors were our main source of information as they had both been to the Panama clinic as well as the Costa Rican clinic.  In one conversation with them, I was shown the brain scan of an autistic boy before he had done any stem cell treatments and then his brain scan after six treatments, which occurred over the course of two years.  His brain showed marked change and he is now in a regular school.  Seeing that scan was a turning point for me.  I remember standing in the doctor’s office and thinking – we have to at least try this. For another example of anecdotal success stories see comment to my last post, “Hope for Emma?”

Prior to Emma’s first stem cell treatment in Costa Rica I spoke with a couple of other doctors, a few of whom felt it was inadvisable to go, but prefaced their comments by saying they did not know of the work the Stem Cell Institute was doing personally, and two who said they were watching what the Institute was doing and hoping to replicate their treatments once it was allowed in the US.

To date we have not seen the sort of huge uptick we would hope to see on Emma’s brain scans.  We have been told we shouldn’t expect to see results so soon and that these things can take up to six months to show up.  Again these are opinions regarding a treatment, which has only been done to a few hundred children during the past few years.  Richard and I intend to continue monitoring her through our own observations as well as with periodic brain scans.  We continue to pursue the leading specialists in the field of stem cell research and autism.

At the moment, however, we have decided we cannot return to Panama and the Stem Cell Institute.  Richard and I agreed, when we began advocating for Emma, we would try anything to help her if there was no risk of harming her.  We cannot ignore what we are now being told.

Hope For Emma?

I have spent several hours starting different blog posts over the weekend and this morning, but have been unable to finish any of them.  I am still raw after the phone call Richard and I had with the director of the Stem Cell transplantation program at Children’s Hospital in Boston and the director of the Stem Cell Research Program also at Children’s Hospital in Boston.  See the previous post below, written by Richard on Friday.  An hour after our phone conversation in which they both expressed their concern with the stem cell treatments we have taken Emma to in Central America we received an email from them saying:  “We know that you are trying to do the best for your daughter, but given the issues we discussed, George and I think that you should not go back for stem cell treatment.”

I am feeling overwhelmed with emotions at the moment which is why I am having such a difficult time writing a post.  This blog is about Emma, not my fragile emotional state and though I have certainly written of the difficulties in parenting an autistic child I have tried to always keep Emma front and center – she is the star of this blog.  And yet, it is hard for me to write about anything at the moment because this blog is also about our hopes for Emma.  At the moment my hope is in short supply.

Research

I’m feeling stunned. Early this morning, Ariane and I spoke at length with two of the pre-eminent doctors in the field of stem cell research out of Boston Children’s Hospital. They not only called into question the theoretical basis of what we had been told about the scientific rationale for the stem cell treatments we gave Emma, but warned us that they had the potential to be “extremely dangerous.”

It is possible that this could be another case of “he said, she said,” and that the doctors who recommended the treatment we have been following are every bit as knowledgeable and experienced as the doctors who were warning us not to undergo another such treatment, but frankly, these particular doctors are so highly credentialed that I have to give their opinions more weight – at least until we have gathered more information from others who are universally regarded as experts in both autism and stem cell research.

They gave us the names of two doctors in the Boston area who are considered to be experts in autism research and (perhaps?) stem cell research as well. It wasn’t clear to me from our phone call that the doctors being recommended were definitely doing research with stem cells, but they are involved with autism research as well as a variety of other neurologically based disorders. I made a promise to myself after the phone call today to stop making assumptions, so until we speak, I’ll just say that I’m looking forward to learning more. I visited both their websites and they have impressive credentials. They are both involved in genetic research so even if stem cells aren’t part of their programs perhaps they have other promising treatments under development.

Perhaps. Maybe. Possibly. I’m filled with doubt and uncertainty as to where we go from here. I do know that we have to keep doing more research, and since the entire field of autism is rife with contradictory theories from highly regarded researchers, we have our work cut out for us. More to come.

Em & Muzzy

Emma’s attachment to her green furry monster, Muzzy has grown to such a degree I feel compelled to honor Muzzy with his own post.

There are a number of significant early “signs” of autism:  An absence of pointing as a toddler, unresponsiveness to ones own name and a complete lack of interest or emotional attachment to inanimate objects such as stuffed animals or dolls, to name just a few.  Emma could be counted on to display all three of these things from an early age.  So it has been with great excitement we are witness to her growing desire to bring Muzzy with her on outings.  It is an attachment, which made itself apparent to us during her first stem cell treatment.  Emma asked to take Muzzy into the operating room and the doctors agreed it would be fine.  It was during that initial trip that Emma said to the anesthesiologist, “Muzzy first.”  Thankfully everyone was wonderfully good-natured and went through the motions of putting Muzzy under before it was “Emma’s turn.”

On a recent excursion with Joe, Emma insisted they take the jogger stroller out.  When they returned, I had Joe go over the outing in detail as I took notes.  Joe also took a video, which I haven’t been able to figure out how to post, so I’ve transcribed much of it.  I am always struck by Joe’s ability to use any opportunity to draw more language from Emma.

“Em, you’re too big for the jogger,” Joe said.

“Jogger stroller!” Emma said.

“Who’s going to go in the jogger?  Am I going to sit in it?” Joe asked pretending to climb in.

“NOOOOOO!” Emma said squealing with delight at the absurdity of it.

“I can’t fit!”  Joe exclaimed.

“Too big!” Emma said.

“Yes, I’m too big!” Joe said.  “Who do you want to go in the jogger?”  Joe asked.

“Muzzy!” Emma shouted twirling him around her head by one large furry arm.

“Oh!  You want to put Muzzy in the jogger?”  Joe asked.

“Yes!  Put Muzzy in the jogger.  Go for a walk!”  Emma jumped up and down.

“Okay, where should we go?”

“Muzzy needs to put on his seat belt,” Emma said, carefully buckling Muzzy in.

“Which way should we go?” Joe asked.

Emma carefully pulled up the “hood” on the canopy of the stroller, a flap of fabric covering a plastic window to peer down at Muzzy, checking to be sure he was all right.  “Muzzy sleeping,” she said.

“Big Muzzy is okay.  Esta bien!” Joe said in his Muzzy voice.

“This way!” Emma said, pointing east.  “Muzzy needs to go in the rain jogger,” Emma said.

“Do you think it’s going to rain?” Joe asked.

Emma stopped and lifted the flap to check on Muzzy.  “No!” Emma laughed.  “Let’s go this way, down the hill.”  Emma peered into the jogger stroller at Muzzy and asked him, “Do you want to go fast?”  Then she started running, pushing the stroller ahead of her.

“Do you want to go slow or fast?” is the type of question we often ask Emma as it is still hard for her to answer an open ended question and so we give choices.  Joe is terrific at coming up with choices for her, often one will be ridiculous such as –  Emma do you want to have some yogurt or should we eat this stick?  Emma will then laugh at how absurd this is and choose yogurt.  When we trained with Stanley Greenspan he emphasized the use of choices to increase language and back and forth dialogue.  It is not as easy or simple as it may seem.  I have found myself grappling for creative choices and coming up empty many times.

“How’s Muzzy doing?” Joe asked after a little while.

“Muzzy sleeping,” Emma said.  She stopped running and looked into the stroller.  “Do you want to go back to sleep?” she asked.  Looking at Joe she said, “Muzzy wants a snack.”

“Muzzy’s hungry?” Joe asked.

“Yeah.  Muzzy wants some vanilla yogurt,” Emma said.

After they stopped for a snack and continued on several miles, Emma said, “Time for Muzzy to go back to Granma’s house.  Muzzy needs to put on PJ’s.”

“Then what should we do?”

“Brush teeth, Muzzy go back to sleep,” Emma said.

A Gift

Last night we all settled into the family room to watch Groundhog Day, a family favorite and movie some of us have seen more than a few times.  Toward the end of the movie there is a scene where Bill Murray’s character climbs up onto a stage to be auctioned off to the highest bidder during a party.  Emma, who was sitting to my right with her legs folded, torso leaning against me suddenly said, “It went up, up, up high into the air.  I said I can’t reach, it’s too high,” she reached her arm up as though trying to grab something.  “You have to pull on Mommy’s shirt and ask for help,” as she said this she pulled on my robe.  “Mommy – I need help!  You have to get it down.  Daddy go up the stairs to get it.  Uh-oh it’s up on the ceiling.  We cannot reach it.  You have to reach!  Reach high up.   Jump!  Daddy gets it!  It comes down, down, down, then bump!  Now we have to hold on.  You cannot let go or it goes up, up, up to the ceiling, up into the sky.” Emma looked from Richard to me.  The depth of her eye contact took my breath away.  Her face, filled with sadness, her eyes steady seeking out mine showed understanding.

“This is incredible,” Richard said watching her.  “Do you remember this?”

I nodded my head.  “Oh Em.  Were you sad?” I asked.

“It was a long time ago.  It was a long, long time ago,” She said.

After the movie ended we sat in the living room and Emma continued, repeating the first part of the story and now adding, “You have to hold on, you cannot let go.  If you let go it will fly away.  You have to tie the string,” she gestured with her hands tying a string around her wrist.  “You go to Gaby’s house.  It’s Lili’s birthday party!  We cannot get another balloon.  You cannot let go.  If you let go, it’s all gone.  Emma so upset.”  Emma touched the outer corners of her eyes to show she had once cried over this.  It was absolutely astonishing to witness.  The scene Emma was describing took place either last year or the year before.  Her cousin Lili, who was spending the summer just down the road, was celebrating her birthday, which falls on August 15th.

There is so much to say about Emma’s words last night I hardly know where to begin.  The sheer length of her sentences and the way in which she was relating and putting together a series of events was something I have never seen before, not to this degree.  There was the recognition that it happened around the same time of year as now, and the comment “It was a long time ago”, both of which suggest a depth to her thinking we have rarely if ever seen as well as the understanding of something so abstract as time.  I just posted two days ago regarding Emma’s inability to understand time, and yet here she was referring to an event, which occurred over a year ago and she clearly understood it was “a long time ago”.  I could not imagine these were words she understood much less knew to use in a sentence within an appropriate context had I not heard her last night.

Joe, Richard and I looked at each other in astonishment as Emma continued to talk about Lili’s party and how she had once lost a helium balloon, once there at their house and a couple of times here at ours.  The events were conflated, but the meaning, the emotional weight she felt as a result of loosing the balloons and how she lost them were all correct and factual.

As we climbed the stairs to our bedrooms Richard said, “Hey Emma!  Do you know what tomorrow is?!”

Without turning around or with any hesitation Emma shouted, “It’s Mommy’s birthday!”

This too is noteworthy as Emma is just as likely to have said it was Folgen’s (one of my mother’s two German Shepherds) birthday or Nic’s or hers or Granma’s or my brother Victor’s or his wife Susan’s, who in fact just celebrated her birthday or any number of people who currently occupy the house.  That she has been hearing about the birthday celebrations and activities surrounding today are not so unusual.  What is unusual is the fact she was able to answer Richard’s question without hesitation, demonstrating she has heard us discussing the birthday planning and knew for whom they were for.

Today is my birthday.  I am celebrating half a century.

Emma’s monologue last night was a gift surpassing my wildest dreams.

Back Home

We arrived back in Aspen late Saturday night.  Even Emma, who is the world’s best traveler, was feeling tired.  By the time we arrived in Denver, having missed our connecting flight to Aspen she said, “Go see Granma?”

“Absolutely.  But we missed our connection so we have to wait a few hours.  Then we’ll see Granma.”

“Go see Granma?” Emma said again, anxiety creeping into her voice.  Which is her way of saying – NOW!

Concepts of time are difficult for Emma, if not impossible.  The idea something will happen tomorrow is not something she understands.  If one says, “One minute,” she will patiently wait as she knows from the kitchen timer we use, one minute is a length of time she can count.  Beyond five minutes it all becomes muddled.  Emma will often answer the statement, “tomorrow” with “You have to wait one minute.”

To which we respond, “No Emma.  Tomorrow.  Much longer than one minute.”  We might as well have said, “Next year.”

As we had been traveling for the entire day, having woken up at 6:00AM in Panama and were still traveling at 9:00PM, the idea we would catch a flight at 9:30PM and be back in Aspen by 10:15PM did not lessen her anxiety.  Still, Emma was terrific and did not make too much of a fuss.

I took this photo in the Denver airport.  While waiting for our next flight, Emma grabbed Richard’s newly acquired Panamanian hat and put it on her own head.  Muzzy is in her lap and she is holding her cokie.  (Evidently the Ecuadorians are to be credited with making the first hat we now think of as a Panama Hat.)

One of our faithful readers commented last week she had noticed how Emma was making eye contact in all the photos I have recently posted.  She is right.  Of course I didn’t post the dozens of photos I took when she wasn’t looking at the camera, but that I was able to get any photos of Emma looking at the camera is nothing short of miraculous.  And of course my immediate thought has been – is this the stem cells?!  Is it possible her terrific eye contact since she had her second round of stem cells could possibly be due to the stem cells?  Impossible to know, but it is a striking difference.

Friday night Richard and I went to a wonderful restaurant in Panama City – Manolo Caraccole.  It was absolutely terrific with no menu.  The chef wields his magic in a kitchen one can see from the dining area and produces 11 tapas courses which are brought out – one more delectable than the next.  As we were dining, a young American woman walked in with the attending physician who treated Emma the day before.   It was Dr. Hernandez who spoke to us at length, patiently answering our questions, giving us his opinion and generally making us feel calmer about the entire procedure as we waited for Emma to wake up from the anesthesia on both Tuesday and Thursday.  So when he walked into the tiny restaurant we were happily surprised.  The young American woman said, “This is the man who saved my life.”  She told us she had MS and he was the doctor who had taken care of her.  She was overcome with emotion, her eyes filled with tears as she told us about coming to Panama to have stem cell treatments.  She said she had had to stop working and now was able to go back to work.  She was taking Dr. Hernandez out to dinner to celebrate her recovery.  It was a bizarrely serendipitous meeting on our final night in Panama.

We can only hope the stem cells are doing their work in Emma’s small body as I write this.  It continues to be quite a journey.

It’s good to be home.

Panama – Day 5

We are in the clear.  Emma made it through the second treatment with no side effects.  She stayed in the clinic for two hours after the procedure was over to ensure she didn’t develop any complications.  Our biggest challenge was not worrying about her reaction to the procedure, but in keeping her occupied since she was feeling so terrific she wanted to:  swim, go back to the mall, ride on the carousel, find a water slide, go bowling, all of the above.

Emma waiting to have the stem cell treatment.

Emma awake.

I took this photo and Emma said, “Now go back to sleep.”   Then she closed her eyes.

I asked Richard how he was feeling, now that we were through the second round of stem cell treatments.

“It’s strangely anti-climactic and I’m tired.  It’s not as though I was expecting her to begin quoting Shakespeare, but there’s a kind of post-partum depression feeling.”  He stopped talking for a second then said, “Do you feel it too?”

“Yes, very much so.  I feel as though I’ve been given a sedative.”

“And now we wait,” he said.

“Right.”  I said.   “We wait and try to stay in the present.  I think that’s the hardest part in a way, trying not to think about the future with a lot of fantasies and projections.”

A couple of noteworthy things…  Emma’s recent interest in Muzzy, her green stuffed monster is a positive sign.  She brought Muzzy into the operating room both times and used him to express some of her fears and anxiety.  She has insisted on taking him out with her whenever we’ve gone anywhere during this trip.   In addition to her growing affection for Muzzy is the more elaborate pretend play she is engaging in with more frequency.   She has not wet the bed for 18 nights, even has gotten up in the middle of the night to pee on her own without prompting.  Since we’ve been in Panama Emma has been sleeping in her own bed.  All of these things are positive signs!

Panama – Day 4

Emma began yesterday with a long swim.  She has devised a game where she leaps into the pool with a towel wrapped around her waist.  For some reason this strikes her as the height of hilarity.  Then she drags herself, still wearing the towel, out and onto one of the lounge chairs where she sits and announces to anyone within listening distance that in fact, she has just jumped into the pool wearing a towel.  Regardless of the listener’s reaction, Emma breaks into peals of laughter before leaping into the pool again – with the soaking wet towel.

After Emma’s swimming pool escapades, we ventured off to La Vieja – the old city.

Emma in the ruins discovered in 1519, only to be destroyed by Henry Morgan in 1691.

After visiting the Artisnal Market exhibiting local crafts and going to La Vieja museum we drove to a mall where we were told was a carousel and some other children’s rides.  Emma was ecstatic.

However once she had taken four rides on the carousel, we suggested we look for some of the other rides we had been told of.  There were three.   Two, which she was too big to ride in and one, the teacup ride, which she was the right height for but was empty and they wouldn’t let her on unless another child showed up.  Emma took the first disappointment in stride, “Too big,” she said, nodding her head, the smallest frown appearing on her forehead as she tried to reason this out.  But when she was not allowed to ride inside the teacups because of a lack of other children she began to fret.  “Go on cup ride?” She whimpered.

“Yes, but we need to wait until some other children come to ride too,” We tried to explain.

Our explanation was weak and we knew it, but there was nothing to be done.  Joe and I went to plead with the “supervisor” to see if we could convince them to let her ride on it anyway.  They were resolute.  Emma began to cry, “Go on cup ride?  Go on ride.  You have to wait.  I said no!”

“It’s okay Em, we can wait and see if another child comes, then you can go on the ride too.”

Even while saying this to her, the weakness of the argument was all too apparent.  Why one other child should make a difference was not something any of us could explain.  Was there a balancing issue, weight distribution problem?  Who knows, but our Spanish being what it was, even Joe’s fairly good Spanish, would not sway them.  Meanwhile Emma became increasingly distraught.  All the joy from the carousel was now replaced by a kind of frantic, perseverative mindset.  Eventually another child did come along and Emma was able to ride in the teacup.  It was not a joyful ride. It was as though she no longer could obtain any amount of actual pleasure from the ride.   It had fallen into the “must do” category, an action, which must be taken, but with no enjoyment attached.  There was an addictive quality to the desire.  It was as though she were caught in a rut of thinking, nothing could be said or done to quell.

Emma riding in the teacup.

Once the teacup ride was over Emma went back to the other two, which she was too big for and insisted on riding in either of those.

“Ride in train?” She asked, anxiety creeping into her voice.  “You’re too big, you have to wait,” she said.

“Em, let’s go see if we can find the big indoor playground.  You can bounce,” One of us encouraged.

“No.  Ride?” Emma said.

“Emmy, we can’t go on these other rides and only on the teacup ride if there’s another child.”

“Ride in cup?”  Emma said.

Eventually we were able to pull her away and began to look for the indoor playground.  Emma was unhappy and sucking her thumb, clasping Muzzy to her and repeating the same phrase over and over again.  “Ride on carousel?”

“Okay, let’s ride on the carousel,” Richard said.

It was decided Richard would scout ahead to see if he could find the indoor playground while Emma rode on the carousel a few more times.  Once Richard was out of sight, however, a train came by stopping at the carousel.  So we took the train which runs the length of the shopping mall.  Immediately Emma perked up.

Emma in the train with Muzzy & me.

 

Back to the carousel and then to a round elevated platform where Emma made up a game she called:  “Swing game”.

The Swing Game went on for quite some time, with Emma running around the parimeter of the elevated circle with Muzzy as one of us tried to catch her.

Today we go into the clinic for the second stem cell treatment.  We have been preparing her.

Emma:  Take Muzzy to hospital.  You have to put the mask on. Last time.

Richard:   Yes.  Today is the last day of the hospital.

Emma:  Then bye-bye hospital.  Sleep, wake up, go to play swing game!  Go on airplane, go see Granma!

Richard:  Yes, that’s right.  Tomorrow we rest and then Saturday we go on the airplane to see Granma.

Emma:  I’m so excited.

As are we all.