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Older. Wiser? Stronger!

By Cathy Jameson

I was looking through some old emails for a link and came across a message I had sent to my family and friends about Ronan.  The note was from a time when I’d just started to ask that question no parent wants to raise—could something be wrong with my child?   It was 2005 and Ronan didn’t seem to be that far behind his milestones.  I could tell something was a little bit different though, and a gap had started to widen.  After almost a year in an early intervention program, it was now time for an annual review that would accompany his first transition of services.  He was about to graduate into the preschool program.

The annual review included answering many questions about Ronan’s development, his abilities and of course a set of skills he lacked.  In preparation for this transition I spoke to several specialists who had access to Ronan’s records.  When it came time to conduct the parent interview with each specialist--a pediatrician, a social worker and a psychologist--I started to get a little nervous.  I’d never spoken so formally about Ronan before, but I knew it was a necessary step in the evaluation process.  Each interview was an hour or so in length so I prepared talking points to share.  I didn’t tire talking about what I thought was going on with Ronan, what I hoped he’d be able to receive as far as his education went and how I was going to remain an integral participant in all of the decisions being made for Ronan.  

I don’t remember too much about the psychologist or the social worker’s interviews.  I was most nervous for those two since I hadn’t spoken to either type of professional before personally.  We’d had a case worker for Ronan as he entered the early intervention program, but I did more work that she did.  Having no previous experience with these two fields, I thought it funny at first that I had to talk to them about Ronan when Ronan couldn’t tell me what he was thinking or feeling in the first place.  Both the psychologist and social worker were pleasant and agreeable, so my fear subsided soon into that long day of evaluations.  The next part of the process included my speaking with the pediatrician who was attending Ronan’s case.  I didn’t realize how long that session was going to be.  Nor did I realize how much I would be educating the doctor. 

We went over a slew of topics—prenatal history, birthing process, first few months at home, typical milestones, vaccine record, childhood ailments, the usual questions one would answer at any initial consult.  The further we got through Ronan’s history, and the closer to when I noticed his delays, I interjected my theory of why Ronan acted the way he did.  I said I thought Ronan had a reaction to his vaccines.   I also told the doctor I was going to fix that.  I don’t remember how he reacted, but I know he was taking a lot of notes while I spoke.  Ronan was going through his own set of tests and evaluations by the same team members as well as with his teachers.  Once Ronan’s tests were over, everyone would reconvene so I could receive feedback from their reports.

I don’t remember everything that happened between the break and the final update.  I know that it was agreed that Ronan would graduate from the infant-toddler program to the special education preschool program.  Most services were to remain the same and an appropriate preschool would be included in that decision.  It seemed that would be the next step but then, I got a little nervous again because I now had to go back to talk to the pediatrician.  This was not in the original agenda.   I wondered if the doctor had discovered something else.  Maybe Ronan actually had a disease or some anomaly that I’d overlooked.  I wondered if this thing Ronan had was much worse than I originally thought.  I returned to the interview room and waited for the doctor to come in to have this final chat. 

I got the unofficial reports that yes, he was a charming little boy with a strong will.  Yes, Ronan continued to have delays.  Yes, your son needed intervention.  Yes, Ronan would stay in the system.   Then, the conversations slowed a bit.  The doctor started asking me questions again.  He went so far as to mention the “A” word to me.  “Have you thought that these things Ronan does…could be…?”  The way he said it, coupled with the reports offered by Ronan’s teachers and therapists were not a positive autism diagnosis. Call it a “soft” warning to buy time, and that maybe no one wanted to be the bearer of bad news, but Ronan had already walked away with no specific diagnosis.  I stated what I had said before, that Ronan had some sort of reaction to his vaccines.  Those caused these “issues”, and I was going to look at how other parents helped their vaccine injured children get better.  Maybe the early intervention team thought I was nuts and didn’t want to burst my bubble.  The doctor nodded his head as I spoke, took a few more notes and responded.  He said the reports were compiled and Ronan would continue with the therapy he had already started when he was enrolled in early intervention:  maximum amount of time for speech, occupational and physical therapy with full-time placement in the special needs preschool.


I kept Ronan on the biomedical route of hopeful healing for the next few years.  Ronan did well with dietary intervention, an introduction to more supplements and lots of encouragement from his family.  I have remembered that conversation with the pediatrician a few times over the years.  That doctor said that how much I already knew would surely benefit Ronan.  I had obviously done a lot of work already and the medical questions I had about Ronan were ones he couldn’t answer.  I made a big impression on him and he followed up with me a year later despite not having any further professional relationship with Ronan.  He was genuinely interested in the choices I made for Ronan’s health and asked for an update on what was working for him.  He also offered to be of assistance if I needed help understanding any of the medical things we might run into.  

2005.  It feels like a century ago.  That transitional meeting was one of my first milestones as a special needs parent—being brave enough to say what I had to say, being wise enough to have already started to look for answers, being smart enough to stand up for and promote biomedical intervention, and being vocal enough to say Ronan has some problems and yes, I need help.  I never thought I’d still be working as hard as I do daily for my child, and I didn’t think I’d be at this for so long either. 

My previous experience with children who had problems during childhood is far different than what I experience with Ronan.  Most of those children eventually outgrew their problem or skilled out of therapy.  One or two remained crippled with their disability, and others were miraculously cured of whatever ailed them.  Normal life wasn’t so far from their reach, but I fear it is a galaxies away for Ronan the longer he and I walk this walk.   I was so sure I’d beat this thing that turned my son from typical beautiful baby into global developmentally delayed toddler.   I haven’t though.  So, sometimes when I least expect to be touched by something, when I think all my emotions are tapped out for the day, I come across something like this email.  I’ve reread it several times while writing this piece just to remind myself what I have had to do as a new special needs mother.  Yep, I wrote it. It was me, young mom on a mission.   Making things happen and standing up for others is what my life is all about now.  Ronan can’t be vocal for himself just yet, so I will continue to stand up for him.  I’ll stand taller, prouder and be louder for his needs.  It’s part of who I am.  I’m not so young anymore, but I am, and will forever remain, that little boy’s biggest advocate. 

Fall 2005

(…an excerpt from an email to my family at the beginning of this journey…)

The first day of the interviewing was grueling since I was the one answering countless questions to the county’s early intervention pediatrician, psychologist and social worker.  At the end of the medical exam and history session, an almost hour-long interview of recapping what's going on with Ronan, the medical doctor closed Ronan's folder and just sat in his seat.  He looked like Dr. Freud and I thought I was going to be nailed as that nagging Mom that I am.  The doctor kept quiet for at least another full agonizing minute before saying, "Mrs. Jameson, if you had come into any doctor's office 30 years ago, you would have been kicked out."  I said to him, "Because no one would be able to diagnose Ronan?"  "No," the doctor said, "…because you know too much." 

Then he looked at me and said, "If you had come to my office ten years ago and said that you think foods caused behavioral changes I would have laughed in your face."  [He had already commented on wanting more info on digestive enzymes and was impressed they worked—Ronan, at 29.5 months old finally started walking 3 days after starting enzyme and dietary intervention.] 

The doctor still looked like he was going to yell at me, and I sat pensively in my chair.  I thought I was going to get slammed since I knew he wasn't finished.  The doc slowly looked up at me and said, "If I was a special needs kid, I would want you for my Mom."  I walked away from that conversation very hopeful.  I was so proud of me and that little boy who is such the sunshine in our lives. Days can be real tough, but we'll keep doing what we're doing to keep Ronan’s little world going round and round.

Cathy Jameson is a Contributing Editor for Age of Autism.



USMLE Step 1

No institution in this world could teach anybody or any parent how to be a great mom or the best dad. It boils down to you as a person how you want your family to be.


When They Tell Me

the psychologist,
the therapist,
the nurse practitioner,
and the intern,
we are crowded
in one office.
They inhale
what air is left,
the breath
I imagine
they collectively take
each time the diagnosis
is given.
Why do we say given
when so much is taken away?
I take my time to respond,
my eyes wandering to the art
of children framed
along the wall,
and I can not stop myself
from rising,
from deliberately
reading the labels
telling me these drawings
were done by autistic
children in Russia.
I am the only one
standing, the rest
still waiting. Suddenly I laugh,
and I am not sure
if I have laughed to myself
or aloud in front of them.
If I could just at this moment
lead them home to my room,
show my bedside table
piled with books overdue:
the woman who talks with gorillas,
the one who thinks in pictures,
the son who loves windows,
those who see smells,
the girl who paints prismatic paintings
If I could open my journal
point to the pages
where I have dared
to write the word.
I have known for so long,
I wonder if I have brought this on.

by Grey Brown
Brown teaches writing at Duke University and Duke Medical Center. She is the author of the book, "When They Tell Me," which chronicles her family's struggle with her daughter's autism. Brown joins host Frank Stasio to read from her work and discuss the therapeutic power of poetry. http://wunc.org/tsot/archive/sot0430c09.mp3/view


Thank you for this Cathy, something I needed to hear again and again. We have also not "beaten" this thing that I thought we would be at a different place 7 years later, but NEVER and I mean Never do we wake up and not do the most we can that day to take 5 steps forward. We have definitely come a long way but we have miles to go. I actually wake up every day looking at my daughters eyes thanking her for choosing me as her mom and showing me how to be the wiser and stronger person that I am. Thanks Cat.


Cathy the love,the care,the strengh comes through your
articles. Thank you for sharing,it is always a pleasure
to read your positive words.Yes staying strong and to provide the best care to our children is a number one priority.Long time ago my son's specialist told me when
life hands you a lemon,add lots of sugar and love to it and
make the most beautiful lemonade.


The determination of a great parent is the gold piece. It is within us and we are the ones who know our children the best. I am inspired by your article. Thank you for sharing. For you and all the moms and dads who are so courageous to seek answers - GOLDEN!


Good piece - as always. Too bad you couldn't clone that pediatrician; if only they were all more like him...instead of the "specialist" that Rileysmom had to deal with. And by the way, Rileysmom your response was great, too. I can so relate to both of you...

Sarge Goodchild

Ronan will recover because he has you as a mother.


Thank you, Cathy. I really, really needed this today.


Cat, this was a wonderful way to start my day. Reading this made me think of how far we've come, Riley and I. Sometimes I feel like I'm not doing enough to heal him. I have to be missing something as he hasn't started doing this or that. I hear other mom's and dad's say, "We did X with Y and our child did Z almost immediately" and I feel defeated because I either can't afford X and Y, or I didn't even know X and Y would help him. I feel I should know all there is to know but have no idea where to start. Sometimes I feel like I'm bluffing, as if I think I know more than I actually do. IEP's still scare the shit out of me and I wonder if I'm asking for or putting my foot down on the right things for him.
As I'm drinking my coffee this morning, I'm thinking that I'll keep plugging along. I will keep doing everything I'm already doing and when something new comes along...(provided I can afford it) I'll do that too. It is wonderful to know that I'm not the only one that fears, gets tangled up in the "what if's" and then pulls their self up by their boot straps and keeps stomping. I can bare the looks I get from people, I can bare the sarcastic comments on the Internet and from family members, it's all for him.
Since I started this "journey", I've learned to stand up. Not just stand but to pull myself beyond my 5' 1" stature and be 6' tall and bullet proof. To look a doctor straight in the eye and say "You work for me and WE will discuss the course of action that WE are going to take with my son. If at any time YOU over step your boundaries, I will fire you". An example of this was the firing of the gastro doctor we were referred to at the Cleveland Clinic. As she giggled a bit when I told her that Riley was GF, CF and egg free (even though I brought all of his testing material with me). As she pursed her lips and closed her eyes as I mentioned the DAN treatments we had done with Riley for over 5 yrs, I had the feeling that this particular meeting was going no where fast. She then preceded to tell me that her 2 yr old daughter has been on Miralax since she was 2 months old and would probably be on it until college because she "poops golf balls". That woman was fired the second she pursed her lips. Doctors are a dime a dozen and I'm looking for the gold pieces in those dimes. I am bound and determined to find each and everyone of them for Riley.
Older, wiser, stronger...yep, and bullet proof.
Thanks Cat.

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