AGE OF AUTISM

Lady of the House

Managing Editor's Note: That photo will be familiar to fans of BBC TV. It's Keeping Up Appearances' Hyacinth Bucket (that's Boo-kay!) answering the phone with her standard "The Boo-Kay residence. The LADY of the house speaking!"  Not to be confused with our own Cathy Jameson, but a fun photo nonetheless.

By Cathy Jameson

“Wrong number,” I replied. 

Every few weeks someone calls the house looking for a woman named Rosa.  I can tell right away that it’s either a telemarketer or a collection agency.  Sometimes it’s a recording for Rosa to please call the 800 number back.  Other times when I’ve pick up the phone I recognize a fuzzy sound in my ear and think uh, oh.  The low sound with a bit of static muffles some of who I know is in the background.  It’s the distant chatter of hundreds of operators sitting in a call center.  That sound is a tell tale sign that comes with a knee-jerk reaction--don’t breathe; they’ll know I’m alive and will think they can start talking to me.  The lone operator assigned to track Rosa with my phone number is relentless despite the “wrong number” responses I’ve given in the past.  I’ve had to adopt a new strategy when I hear that muffled noise when I pick up the phone:  hang up quickly.  It saves me more time.

The last call I got caught me off guard.  I answered the phone thinking it was a friend.  I waited a few seconds after I’d said hello and realized the call wasn’t for me.  It was for Rosa.  I decided not to hang up right away and answered again with a long, drawn out, “H-e-l-l-o???”  The collection agency was once more trying to get a hold of Rosa.  Using one of their underpaid, irritated automatons pretending to sound chipper I heard, “Good morning!  May I please speak to Rosa?”  I replied, “You have the wrong number,” and politely tried to hang up.  Cutting me off the operator said, “Ma’am, are you the lady of the house?”

I had to laugh.  Lady of the House.  What a catchy title!  It reeks of regality and privilege.  I pictured myself lounging, completely lazy and fully catered to by wait staff on a lovely afternoon.  I saw myself sitting poolside with a tasty adult beverage in hand.  What fun!  Too bad for me though.  It’s so not how I really am or really see myself, my situation or my home.  Frumpy, exhausting and a tad on the disorganized side describes more of me and what’s going on around me.  This was especially so on the morning of that call.  If I was the Lady of the House I surely wouldn’t be answering my own phone.  I’d have someone else do that.  I certainly wouldn’t still be in my pajamas at 10am eating cereal with a plastic kid’s spoon.   I definitely wouldn’t have driven my children to school in those pajamas either.  But I did.

“Ma’am?”  

Back to the phone call.  “Are you the lady of the house?”  I paused long enough to envision myself this time being pampered in a mansion sitting atop an impeccably landscaped lawn at the edge of the ocean.  Stammering I said, “Lady of the house?!  Nope, but thanks for that thought.  You have the wrong number.” 

This call was turning out to be entertaining.  I didn’t want to hang up as quickly as I usually do, so I added, “Rosa doesn’t live here.”

I stayed on the line wondering what would come next.  Clearly tired of making calls for someone else, the operator sighed and asked again, “So you’re not Rosa?  We need her to contact us about her account.  Do you know where she is? ”

I Promise You

By Cathy Jameson

How well do you know the people in the autism community?  How much do you think they do for their child?  I invite you to come take a peek at what might be going on just a few doors down from your own: 

-A parent is suspected for Munchausen by proxy syndrome by a medical provider because the parent wishes to explore more natural, non-pharmaceutical options for their child’s treatment for autism. 

-A parent is cyber bullied by neighbors when their disabled child’s needs inconvenience the typical neighbor children’s playtime at the local play ground.  Belittling emails are passed back and forth behind the special needs parent’s back as they make fun of her son’s disabilities.  The parent is desperate to find friends for herself because it’s become increasingly difficult to maintain the typical ones she had after her son was diagnosed with autism.

-A parent is awoken by knocking on the door at 7am by a police officer.  The school has accused the parents of keeping their child home with unexcused absences.  To no avail the parent has repeatedly requested that the child’s school be made safe after discovering that the school staff practice the use of restraint and seclusion (R & S) as means of first-line of defense, I mean discipline.  Instead of utilizing positive behavior supports the school refuses to work with the parents.  Parents in turn fear for their child’s safety and keep the child home.  

-A parent requests further investigation and support for her child with who was suspended for a meltdown that escalated when the child’s typical supports were denied.  Instead of calling the parent during the two-hour incident, the police were summoned.  The child in question is five.  Parent’s input was not considered relevant and ignored.  School states in a report after the incident that, “We can handle everything.”  Parent fears what “handle” really means.

-A single parent is scorned for standing up for her child’s right to a safe school environment after discovering teachers are abusing and neglecting the child in the classroom.

-A parent becomes an outcast to extended family members for following a natural, biomedical treatment plan to ease some of the symptoms autism plays on his child’s health care needs. Traditional pharmaceuticals have only exacerbated the symptoms causing serious side effects and regression with behaviors.  Extended family thinks the parent is just looking for attention.  They also think a spanking will cure all of the child’s problems.  

-A parent picks up a second job to pay for therapy that insurance won’t cover.  Marital strain is felt as one parent is left to tend to the affected child, the typical children and all of the household needs.  The working parent starts to resent the excessive hours being clocked for a measly paycheck.  Tension is the new normal.

-A parent moves their family across the country in the hopes of seeking better health from a team of professionals known to offer top-notch care.  The parent discovers that the health care providers are too busy researching everything but the actual child standing in front of them. 

-A parent hides their child’s former autism diagnosis after years of recovery efforts.  Recovery is achieved but the stigma that came with the initial diagnosis is too much to bear.  They choose to only go forward, to seek future opportunities and to quietly leave the past behind them.

-A parent takes on a school district after being denied federally mandated services.  Their child is targeted by teachers as the parent is labeled a trouble maker asking too many questions.

-A parent is kicked out of a pediatrician’s office for delaying vaccines after the child had a reaction to vaccines previously received.  Instead of working with the parent to create a better plan for that child’s health needs the staff refuse to treat the child altogether.

Those stories are at some level horrifying and were not headlines criss-crossing the nation’s newspapers.  Each of those situations has happened to someone I know.  It’s quite a list.  And, easily I could add to it.  Maybe it’s the company I keep—I have more friends now who are parents of special needs children than of typical children.

At the hands of another person, a human being took common sense out of the equation when working with the special needs children.  These people, some of them highly educated and esteemed by their community, had the potential to do the right thing.  They chose to throw out every bit of common sense as well as a lot of compassion.  They could have offered ideas, assistance and opportunities.  They chose instead to react with appalling responses and actions. 

Of course two sides to every story must be told, and giving the other side a chance would be ideal.  But, I’ve also been the character in similar situations and in doing so have witnessed firsthand how truly pathetic some people conduct themselves.  I’ve dealt with irrational people offering illogical responses.  They and their answers got me nowhere.  I was forced to learn more about the systems offering programs to assist me and my child.  I desperately tried to fix what I could for Ronan.  I learned you can’t fix a broken system.  That discovery taught me how to be on my guard, to watch my back and to speak out before someone else gets hurt.   

Vive la Difference: The LeRoy Outbreak, Toxic Gender Disparity and Conversion of the Media

By Adriana Gamondes

By now the outbreak of tics and Tourette’s like symptoms among primarily female high school students in LeRoy, New York, has hit the mainstream media—all except The New York Times, which so far has printed nothing on the tragedy.  Why? 

It’s possible that Times management may have foreseen that, after more low-brow media had exhausted the standard diversionary red herring theory for mass outbreaks of movement disorders among females— that the girls suffered from the too-Freudian “conversion disorder” or “mass hysteria”— environmentalists would eventually descend on LeRoy to test the soil, air and water and study potential toxic sources.

The problem for the Times may be that there's no progressive-seeming way to spin the story—mod shade of lipstick or not, the hysteria theory is still a pig.  Though it’s a very useful pig with so many industry-exculpating applications which the Times is deeply invested in. For instance, what if environmental theory in the LeRoy outbreak implicates industries or institutions represented by the Times’ shared board members? 

Maybe in an oblique, all-purpose pitch to de-pig-ify the hysteria theory, Times editors could dredge up a representative from an astroturf breed of Prozac-friendly postfeminist like Elizabeth Wilson, author of Psychosomatic: Feminism and the Neurological Body, in which she argues incomprehensibly that:

Listening to Prozac does not simplistically replace psychological or cultural determinism with biological determinism; more carefully, it opens up the very nature of determination (i.e., certainty, termination, resolution) to interrogation.

But there’s another option beyond bad genes and bad childhoods: Biological indeterminism—as in consumers have little informed consent about the safety of the air we breathe, the food and water we consume and the drugs we take. We are not always in control of how toxins impact us in combination, how they got into us in the first place or our individual toxic susceptibility.

The environmentalists have in fact descended on Leroy::

The competing psychological-disorder diagnosis — Buffalo Drs. Laszlo Mechtler and Jennifer McVige have called it both conversion disorder and mass psychogenic illness — is what's known as a diagnosis of exclusion, meaning it is applied when other more tangible explanations have been ruled out.

Miller and representatives of the environmental and health groups say not enough work has been done to exclude these other possibilities.

"Right now you have a cluster of sick kids, and nobody's quite sure what's going on. It's kind of been a rush to judgment here," said Claire Barnett, executive director of the Healthy Schools Network, a nonprofit group with offices in Washington, D.C., and Albany.

Officials at the state Department of Health, which has looked into the cluster, avoid speculating about the cause. Spokesman Jeffrey Hammond notes there are "many causes of tics-like symptoms," and stress often makes them worse.

But Hammond did say most of the girls did not get the HPV vaccine Gardasil, so any side effects wouldn't have caused the symptoms. He said the physicians in Buffalo also ruled out infections in the patients they saw.

Hammond noted that indoor air testing done for the school district found no evidence of toxic-chemical contamination, a lack of fresh air, mold or other problems. And he argued the lack of symptoms reported by staff members and male students argued against a contaminant spread through the air.

In the end the claim that solely female students were stricken has been contradicted. Aside from vague reports that, among the 15 or so victims in LeRoy, one male student may have been affected, Age of Autism blog editors Dan Olmsted and Mark Blaxill were contacted by the family of Bryan Trembley, a thirty-five year old resident of Bath, New York, who developed very similar symptoms to the girls in LeRoy in September. Bath—aptly named considering that, like LeRoy, the area is low-lying and subject to flooding as the Age of Autism editors documented— is approximately 60 miles southeast of LeRoy, though the towns appear to be connected by an intricate network of waterways.

Bryan Trembley is obviously not an adolescent or female and so far, no one has suggested he suffers from conversion disorder. In a similar past outbreaks, such as at the William Byrd High School in Roanoke, Virginia in 2007, one adult teacher succumbed to tics along with students. Still, the gender disparity and adolescent bent of the syndrome is obvious, which is likely what brought on quaint speculations of victims’ female-borne psychological instability. Who could be more “susceptible” to this kind of sloppy inference than teenage girls?

Rise From the Ashes

By Cathy Jameson

A rush of excitement filled my house this week.  Ronan found a word!  I should restate that.  He retrieved a word he’d said many, many moons ago.  Gathered around his room one night after being tucked in, Ronan’s siblings and I waited to hear him.  After several attempts with great encouragement from Daddy, we cheered in disbelief and then in ecstatic joy when our own ears were graced with this major accomplishment. 

The excitement started earlier in the evening when Ronan first spoke.  My husband knew it was more than just a vocal attempt like we sometimes hear.  When Ronan spoke again my husband quickly called me over to please come have a listen myself!  I sat on the edge of Ronan’s bed with my typical children standing close by because they too were filled with excitement.  Ronan had only moments earlier uttered this word for Daddy, so we were all anxiously hoping and waiting to see if he could say it again.  While Ronan lay all snug under the blankies my husband began the simple nursery rhyme slowly with a twinkle in his eye, “Ring….around….the Rosie.  Pocket…full of…posies…..”  Wait for it.  Wait for it.  “….Ahhhhd-chgees….ahhhhhd-shezzz…,” Ronan sputtered while Daddy continued amidst the squeals from the rest of us, “WE ALL FALL DOWNNNNNN!”  With rounds of belly laughs, lots of smiles and some fist pumps in the air, that moment was a perfect way to end another one of our very long days.

Years ago we used to sing Ring Around the Rosie to Ronan because we knew he could say “ashes.”  He always said it when he was little.  Ronan would wait excitedly for his cue to fill in that part of the song.  He could say it so many times back then.  Over the years we’ve tried to get him to say “ashes” again, but he never did.  This week something magical happened.  We heard his voice again.  Very, very infrequently Ronan makes sounds that could be words.  It takes great concentration and effort which can quickly turn into frustration followed by silence.  When some sounds turn into real live words you’d have thought Ronan just gave a Valedictory speech.  How we cheer for him!  The entire family jumps up in the hopes of hearing Ronan speak one more time because his speech is one of the missing pieces we all so diligently work to find.  

What a feeling it is to hear Ronan talk.  He had two more verbal attempts and successes in the last few days with this one needing to be noted as well.  This week I didn’t doubt his ability to talk like I sometimes do.  I didn’t have to question myself, Could what I just heard really be language?  Sometimes it is a fluke and I think, Oh!  Was that…? Did I hear him say something?  Nah, it was just noises, not even babbling.  No return of words yet.  This time though, he didn’t just sort of make out a word I was hoping he’d say.  He did say some words. 

Your Life Narrated by Me, Your Mother

By Cathy Jameson

I noticed something the other day.  I talk a lot.  I talk more now than before.  It’s not all the time that I’m a Chatty Cathy, but when I’m with Ronan I don’t shut up.  I am still somewhat reserved when it comes to first-time meet and greets with new friends and with people I get to meet.  The inner geek in me will want to sit at the back of the group, out of sight nestled a corner or the back row.  But, when it comes to taking care of Ronan I don’t mind sticking my neck out to be seen.  Nor do I mind raising my voice to be heard. 

I realized how much I talk when I’m with Ronan when he and I started out last week to get to an appointment.  I caught myself non-stop talking while I was holding Ronan’s hand.  As we walked into the therapist’s waiting room I said, “Keep going, you’re almost there, step over the toys, careful…careful, sit down, hold on, stay with Mommy.  You did it!”  I stayed close to Ronan stroking his back as he sat in my lap while we waited for his name to be called.  The video playing on the television was a tad loud, as were the other patients and their siblings also in the waiting room.  I quietly spoke to Ronan, “You like this movie?  It’s called “Cars 2.”  Remember we saw it at the theatre with Daddy.  Oh, look!  That part made you laugh.  Hey, it’s your turn now.  Stand up, let’s go.  Come on, watch your step.  Down the hallway, here you go!  Okay, bye now, Buddy.  I’ll see you in a little bit.  Kiss.”  How many times have I done that--given a play-by-play of exactly who, what, where, when and why?

Did I really need to narrate the entire trip into the clinic and into the therapy room?  Did Ronan care that I was observing and noting all sorts of things as we went?  Did he see all of it as we went by?  Did he hear it?   Of course, he heard it.  But, I wonder.  Does Ronan tune me out like he seems to tune out many other things in his environment?  Why do I think I need to state every step and every action?  I guess part of it is because I’ve had to remind Ronan several times about the same thing (walk OVER the toy, not ON it).  Maybe I talk so much because I want a little bit of feedback that shows me Ronan has some sort of understanding of what’s going on in the world.  But, since Ronan is still just barely pre-verbal, the only reliable feedback I get is from me talking to myself. 

Who knows though; maybe with all this chit chat I do for Ronan will have him one day spontaneously respond, “Ma, cut it out.  Okay?  I can do it by myself now.  Watch me.”

A World of Hurt

By Cathy Jameson

Thank you, Dr. James Conway for the title for this post.  Conway is a pediatric disease specialist according to in this article.  You’ll hear more about him toward the end of my post.

I tried not to read the article early last week.  I hesitated to click on the link seeing a short intro for it on a news site.  I knew the topic was going to get me all riled up.  Since I already have enough on my plate I wanted to spare myself a few minutes of unnecessary aggravation.  I should have avoided the story, but I didn’t.  I peeked.  As much as I want to shield you from the content in the link you’ll have to open it and read the article, too. 

The opening sentence starts out fine.  The reporter shares that a growing trend of parents are not vaccinating their children.  I smiled and sent a virtual high five toward my computer screen.  Woot!  More parents are onto something!  They are making bold statements (and taking action) about the state of the current vaccine schedule. 

Then, my high-fived hand came down.  My smile turned into pursed lips, and I shook my head.  I stopped at the third sentence.  A pediatrician named Margaret Hennessey interviewed on a radio show said that parents should not skip vaccines.  Tsk. Tsk.  Why don’t you know?  When everyone is getting (vaccines) they work better! 

Really?

What Hennesey mentions is also known as herd immunity.  Guess what?  It doesn’t work.

The doctor now makes her own bold statement:  “There's no science that supports that it's worthwhile holding off on these vaccines.”  She goes on to say that vaccines can prevent infant death.  Her science is saying that vaccines are safe.  And effective.  And we should all get them.  Or babies will die.

What?!

This is where I started talking to my computer screen, “Vaccines are effective?!  For what?  I know what they are effective in doing—they’re effective in causing mitochondrial dysfunction.    They can cause cell death.   Vaccines can result in autism.  They can effectively change people’s lives negatively and possibly forever.  Vaccines even lead to death.  How’s that for the ultimate in effective?

I grumbled to myself, “Worthwhile, too?  Hmpf.  I’ll show you what’s worthwhile.  My child, his health and preventing a vaccine injury is worthwhile.  Assuming that by blinding jabbing anyone and everyone thinking that will make vaccines effective is ludicrous.”  My guess is Dr. Hennessy hasn’t read everything there is to read on vaccine safety.  She should know that some people can and have negative reactions to vaccines and what’s in them.  With just a few clicks of the mouse one can certainly find more than enough evidence that science does exist to support it being worthwhile to hold off on vaccines.  Just look at the massive list Talk About Curing Autism (TACA) and its contributors have compiled!

I started to regret opening the link to the news story.  Since I wasn’t finished with the article I sat back in my chair, refocused on the monitor and cringed.  I forced myself to continue to read. 

Enter Dr. James Conway.  Remember he’s that guy that gave me the idea for today’s post.  Wait for his little tidbit.  Conway says that not vaccinating children "is like putting your kids out in traffic."

I was now standing up yelling at my computer.  Conway continues.  He says, ‘…they might not get hit by a car, but if they do "that's a world of hurt."’

Are you kidding me?!?!

Autism Parenting: Master of Disaster

By Cathy Jameson

I recently talked to my typical kids about a house emergency plan.  We hadn’t had a review of that topic in a few months.  I wanted the kids to remember how to safely leave the house should we ever have a fire, earthquake or other event where we’d have to evacuate quickly.  We talked about how to call the police and which neighbor could help us if we had a middle-of-the-night scare.  My oldest daughter and my typical son understood the review well.  Ronan’s next younger sister had many questions and of course many concerns.  I answered honestly while also hoping to not instill fear as I spoke. 

I explained that these types of events are called “What if…” moments.  No one ever wants to go through them, but we should all be prepared for them just in case.  We covered what constituted an emergency, who was going to grab whom on the way out of the house, where our meeting place was and how we’d stay safe once help was on the way.  My five-year old sat quietly listening and then asked, “What about my stuff like my Bekah Bear and Flower Pillow?”  I reminded her that we would be sad if we couldn’t see her things again, but we can always get new ones later. “There’s only one of you, and I can’t go buy a new you.  So, get out of the house as quickly as you can.  Don’t go back in.  Please, don’t go back.” 

Two days after we had re-established our family emergency plan I had to make a 9-1-1 call.  Fortunately my older children were at school, so only my youngest and I were home at the time.  I had less people to get outside quickly.  The emergency was averted and then resolved with the assistance of our local rescue crew.  In just a few minutes an entire scenario of “What Ifs” flooded my thoughts.  I shudder at the thought of “What if….what if the house went up in flames?  What if I couldn’t get out of there fast enough?  What if I couldn’t save my own child?”  I am thankful for fast thinking on my part and a blessing that saved us from potential disaster. 

Harry Horne-Roberts Death Ruled Heart Attack

Managing Editor's Note: For background on Harry Horne-Roberts' death please read Harry Horne-Roberts's Parents Welcome Probe into Death While in Autism Care Home . I was recently at a therapy center and noticed a huge weight gain in two teen boys with autism who are each now grossly obese and have difficulty walking. What of their health?  Again, our condolences to Harry's family.

By Sarah Collins of Ham & High

Harry Horne-Roberts was just 20-years-old when he died two years after moving into Hillgreen Care home in Haringey.

There had been no indication that anything was wrong and just days before his death he went walking with his parents in Epping Forest and was his usual bouncy self.

But on December 16, 2009 at 7am he was found face down on his bedroom floor and pronounced dead at 10.30am.

Coroner Dr Andrew Walker of Barnet Coroner’s Court ruled the 22-stone teenager’s death was due to a heart attack linked to obesity at an inquest on Wednesday last week (January 4).

But Harry’s parents, Jennifer Horne-Roberts and Keith Roberts, claimed strong anti-psychotic drugs he was given without their knowledge were responsible.

They claim his three stone weight gain during 15 months in care was due to the drug chloropromazine and that the boisterous 6t-teen was given the drugs without their knowledge.

Before he moved to the care home, Harry had been exuberant and regularly took part in sports and outings.

His parents took the “heartbreaking” step to put Harry into care to increase his independence, but claimed during the inquest they were instead locked out of his treatment with “catastrophic consequences”.

They only learned that he was on the drug when a carer let the information slip in March 2009 and then wrote four letters to Harry’s psychiatrist without receiving a reply.

During the inquest psychiatrist Dr Sujeet Jaydeokar said: “There was a breakdown of communications.”

He added: “With hindsight it would have been better if we had copied you into the letters. We have now changed our practice and now copy all letters to family members.”

Haringey Mental Health Trust acknowledged its failure to implement a dietician-led weight loss programme.

The trust has now implemented new processes to improve the outcome for obese patients with learning disabilities.  Read the full article in Ham & High.

That’s My Boy!

By Cathy Jameson

I have beautiful children.  They have a fabulous mother.  Their Daddy is one of the strongest people on the planet.  We are a well-loved family.  Things are going mostly okay for us right now.  Life has its ups and downs, but we usually end up pulling through.  Alright, I’ll stop before I make myself sick with these exaggerated descriptions. 

Truth be told, I do have a great family.  My typical kids learn firsthand about compassion, tolerance and special-needs care because of situations that come up with their brother.  My kids are very aware that Ronan has limitations that affect all of us. I don’t think they are resentful of what we have gone through and what they unknowingly have had to give up.  They know we do things for Ronan that go beyond what other families typically do for their children.  They truly understand why they can and can’t do things when he is present.  Empathy is alive in this house.

Ronan and one of my typical children recently had a blood draw.  My daughter went in with some trepidation but fared well.  She shed tears in the beginning of the process as expected.  I had to hold back some of my own as my Mommy heart ached watching her.  But then, my welled-up eyes quickly squinted closed.  I tried to silence bits of laughter that wanted to squeak out when my five-year old yelled in between sobs, “Stop! Give me back my blood. Put it back!  You can’t have it.  I need my b-l-o-o-d!!!”  Apparently I didn’t do enough explaining of what was happening to her or why.  A few more little girl tears flowed as the last tube was filled.  I am grateful my daughter didn’t pick up Ronan’s fear and feeling of “I hate all of you in white lab coats” after her turn at the lab. 

Ronan was next.  It’s never fun, easy or quick for him when it comes to blood draws.  Ronan can immediately sense why he’s being brought into a small, mostly sterilized room.  He hates the tight rubber band, gloves, gauze, cheery band aids and lab techs who think they are going to get anywhere near him or his blood.  Ronan tenses up instantly which begins a massive sensory-overloaded fight response.  Veins roll.  Sweat pours.  Tears stain.  Bruising starts.  I don’t usually bring the other kids with me when it’s Ronan’s turn.  But, this time the entire family was in tow.  This trip occurred over a weekend.  Instead of splitting up like we usually do to cover situations like this my husband, all five kids and I descended upon the little laboratory. 

Once my daughter’s draw was done I sat with her and my other kids in an adjoining waiting room.  Ronan’s brother was nervous thinking he too would be going in for blood work.  I assured him he wasn’t, so he waited quietly for a few minutes.  Waiting for a successful blood draw is excruciating.  Ronan’s issues cause long delays.  While we watched TV in the waiting room, Ronan’s little brother worried.  He didn’t like that it was taking so long for Ronan. He didn’t like to hear the small whimpering sounds and then the all-out crying Ronan started to do.  Tears were in full flow in the lab, and rightly so.  But, when I looked over at my typical son sitting next to me his cheeks were also wet with tears.  “Mommy, why does it have to hurt him?  Can’t they be done yet?  I don’t like how it makes Ronan sad.  Can I go see him and Daddy?” Oh, my child!  I scooped my tender-hearted little boy into my lap and held him as long as I could.

True Believer

By Cathy Jameson

My typical children cannot wait for their birthdays.  They love the anticipation and excitement of counting down to their special day.  I hang a Happy Birthday banner and place a special table cloth at the dining table when their day has arrived.  Ronan’s birthday is no exception to the excitement that fills the house when it’s his birthday celebration time; he just doesn’t always show it.  His siblings announce the countdown for his big day which is “just three more days to go, Mommy!!!!”  Giddy sisters and a brother jump up and down for Ronan when they see that the banner and table cloth have finally made their appearance.  The kids burst with excitement when the presents show up on the table.  Ronan usually doesn’t show a great interest in joining the celebration until he realizes the cake on the table is his. 

Ronan’s ninth birthday is this week.  As each of my children’s birthdays approach I reflect on how long that baby of mine has been alive.  I think about how quickly that little bundle grew right before my eyes.  I pray that I’ve done the right thing for that child in the years we’ve already logged.  I also cherish future thoughts of sharing many more years together.  Obviously Ronan’s life and my reflections are drastically different than those of his typical siblings.  The typical sibs are just that:  typical, able, full of accomplished milestones.  Ronan, on the other hand has much still to catch up.  His disabilities, his struggles and his needs cause me to pause when I reflect on Ronan’s past.  Those milestones he should have sailed through so many years ago stay forefront in my mind—talking, stringing words together, talking in sentences, starting conversations—several of those skills are still being worked on.  

I catch myself spending more time thinking about Ronan in the few weeks before his birthday.  Some days I cannot believe he is still here with me—he’s had some scary illnesses and situations that I didn’t think he’d pull through.  Thankfully the kid is still here, still teaching me lessons in life.  I am filled with many thoughts about Ronan that are full of wonder, sheer wonder as I think about who he is and how his life has changed me.  Ronan’s made some major leaps the latter part of this year that leave me wide-eyed and jumping for joy.  His last six months are full of wows that have forced me to slow down to immediately celebrate Ronan and Ronan’s abilities.  I’ve been moved to tears watching him make major communication connections which have opened a new door to learning.    We knew Ronan could read when I asked him over three years ago, “Hey, Ronan. Can you read this?” and he could sign his responses to me.  I recently shared on AofA that Ronan can write and now look at what Ronan brought home from school one day.  He does in fact understand ‘rithmatic facts! 

Ronan matched numerals 1-12 correctly in his book. 
Number sense can be such an abstract concept, but 

Ronan has conquered yet again!

These latest connections fill me with more hope for Ronan and they give me more confidence in myself.  After seeing Ronan’s math work that day I shouted whoops of joy, made several phone calls to our family to announce yet another emerging skill.  After sharing Ronan’s math picture around the web to friends I cried.  I cried tears of joy because that my boy is growing up.  I cried tears of regret that I sometimes spend too much time worrying about his past.  I also cried tears of relief because I can almost allow myself to see, feel and celebrate Ronan’s here and now.  I was caught in a swirl of emotions that day.  Thankfully the positive, happy, can-you-believe-it ones stayed present in my mind.

After that math moment I again renewed my commitment to believe in Ronan.  I felt us both tiptoe forward, closer to more awareness and cognitive healing.  I reminded myself to be surrounded with what I hope is positive and helpful.  I also slowed myself down and remembered to look to Ronan to guide me with what he can handle and manage.  If I can remember to let him set the pace I know we can both celebrate another moment of Ronan Can Do. 

A little over a month ago I asked Ronan a big question I’ve started to ask him, “Hey, Ronan.  Can you ____?”  We were in my office on a Friday night.  I was supposed to be getting the kids ready for bedtime, but I was aching to write a story.  Ronan was antsy and wouldn’t stay with his own activity.  I’ll sometimes let him youtube with me as long as he doesn’t get too close to the computer screen or try to shut the computer off (our monitor now has permanent pen marks where Ronan tried to trace letters on a word document I’d left open; and, buttons are buttons that have to be pushed).  That evening Ronan kept coming back to me gently shoving my wheeled-office chair away from the desk.  It was utter chaos as my husband was away for a business trip and my typical kids were doing everything but getting their jammies on. 

The kids took full advantage of me being exhausted while I tried to sneak away from their bedtime routine.  I kept trying to shoo Ronan away too, but he kept coming back signing “computer.”  After 3 or 4 more interruptions, instead of the two of us butting heads I gave in and said, “Ronan, do you want to watch a movie?”  I love how Ronan assures me he’s listening. I also love how he’s able to tell me that I’m doing a good job communicating with him.  He smiled his goofy smile and signed yes.   I moved the keyboard in front of Ronan and said, “If you want to watch a movie, you need to type your words.  Ronan, can you type?”  Before he could sign anything I opened up a new word document, increased the font size, turned the caps lock on and watched Ronan spell what he wanted to watch.  How floored was I to discover that Ronan can type on a keyboard!  He successfully typed CAT.  His next word was HAT.  I immediately switched to youtube and found a favorite “Cat in the Hat” clip.  While the movie was playing I raced downstairs to where my other children were and squealed, “Ronan just typed a word!  He typed CAT!!!!!”  I bounded back to the office computer before the movie clip was over. 

Pulling up the word document I asked Ronan, “Hey, can you type something else?”  It took a few slow tries in the beginning but Ronan was able to hunt and peck for the right keys.  He hit the caps lock key off which slowed down recognition of the letters as they appeared on the screen.  Still, Ronan had good accuracy and as always, showed great determination.   Ronan looked toward me, signed “b” and “baby” and then went back to the keyboard.  I said, “Do you want to watch Baby Einstein?  Spell baby.”  He typed out:

Bbbbaabbbbbbbbbbbbbbbbby

Hoping to draw more words out I asked Ronan, “You still want to watch it?”

yyyyyyyyyeeeeees

I played a short clip and then reopened the word document again.  Ronan had pointed to a green puppet in the youtube sidebar.  He signed “yes” when I asked if he wanted to see that video next.  As I sounded out green for Ronan to type, he produced this:

gggre3een

My eyes were a bit wet as I tucked my children in that night.  If I hadn’t taken a break from what I wanted to do and if I hadn’t asked Ronan if he could type what he wanted would he ever have been willing to show this skill?  Plus, would I have ever allowed him to use my computer when in the past he’s shut it down, locked me out of it and scribbled all over the screen?  Because I’ve seen my son overcome more struggles than other children will ever have to face, I am thankful that I keep taking chances on Ronan and his abilities. 

Since that Friday night Ronan and I have shared more typing and writing moments.  He can now type simple, full sentences.  He signs, I articulate and sound out his words and he types.  This was one of Ronan’s latest typing episodes:

PLAY MOVIE YES

NEW MOVIE YES

TRAIN

I WANT MOVIE

I caught video of Ronan showing me with signs what he wanted while he made vocal attempts and signed his request: 

With these recent breakthroughs I have had more reasons lately to look forward with Ronan than to look back.  On these good days, I stay truly hopeful and find peace in many of the decisions I have to make for Ronan.  Upcoming birthdays like Ronan’s ninth one this week have the potential to be one of those really tough days to get through.  Bittersweet, not what I expected, resentful and why bother could easily be words or phrases of how I might have reacted to past birthday.  I can’t say I won’t feel those emotions again on Wednesday.  Ronan isn’t going to be nine in the truest sense of the word.  He still lags so very far behind.  He can’t take care of himself and I am surrounded by constant can’t, won’t and doesn’t.  Dealing with both kinds of days, good and bad, and with the many emotions that flood each type of day is truly overwhelming.  Since I’m a true believer in finding something hopeful I pray that I will truly be able to celebrate Ronan and where he is his life right now.

One of the last sentences Ronan typed earlier this week was “I WANT BABY” for one of those Baby Einstein videos he still likes to watch.  Seeing that sentence hover on a clean white word document reminded me of how sad I can still get when I think of Ronan as that perfect little baby he was.  I too want baby, my baby, that baby I carried and then lost to delays, silence and autism.  I crave time that went by too fast and time I can never get back.  Ronan’s baby days were filled with no thoughts of regression or wandering and being non-verbal.  I yearn for how young and carefree I felt as a new mommy never thinking twice about Ronan’s future except that it was going to be happy, easy and wonderful.  As much as I’d like to jump into a time machine to change some of what happened to my child, I would want to use that time machine to whisk myself away to Ronan’s future.  I can’t wait to see what else this little boy can and will do in life.  I’d love to get a sneak peek at myself too to see how I handled everything.  I’m sure the two of us will have worked hard to overcome and to celebrate many more moments together.

Knowing that I have to live and relish each moment I face now brings me out of those time machine thoughts.  I had that baby of mine nine years ago this week.  That baby is a growing boy constantly teaching me that what happened in the past is part of the past.  The past does affect the future, but I can be in charge of gently pushing Ronan to keep him going forward.  I’ll always be ready to shape and encourage his abilities through one successful and believable moment at a time.

Cathy Jameson is a Contributing Editor for Age of Autism.