Guest Post: Daddy Confidential

We have a wonderful guest with us today! Jonathan, a.k.a. Daddy Confidential, contacted me a while ago and since that time I have become a fan of his blog. I absolutely love his sense of humor and really appreciate his witty perspective on parenting. And you know, it's nice to read a quality blog from a guy.

Jonathan is daddy to Fox and husband to Sarah. You will see from the picture below that Fox is a very cute 1-year old. Their family is in the process of a move from downtown Manhattan to the suburbs…which, according to Jonathan, his wife has been plotting since their second date!

Jonathan took some time to do an interview with me and I thought I should give you fair warning… You may laugh suddenly and often. God forbid you just took a sip of coffee, because you will probably spit it out of your mouth. Coffee is a precious natural resource, so we must try very hard not to waste it!!!

Below the interview is a post Jonathan wrote for his blog that talks about autism. He discusses being the parent of a neurotypical child and his own ignorance about autism. There are some great questions posed at the end of his post, so please take a moment to leave a comment and address those questions. Also, check out Daddy Confidential on Facebook and Twitter (@DadConfidential), and then swing by his blog.

Are we good? Are you ready? All right! Let’s get this show on the road.      

CAM:  There isn't usually much testosterone around here, so a male perspective is a nice change of pace! Please share with us your favorite thing and your least favorite thing about being a dad.

DC:  You’re asking about my favorite things? What am I – Julie Andrews? Jeez, you’re forcing me to talk about feelings. Fine. But it’s under duress.

Dads get to be goofballs. For some reason most moms don’t excel at being silly. Their whole repertoire is “tickle tickle!”

Jonathan practicing his monkey act with Fox.

Dads, by contrast, can really channel our natural inclination to be imbeciles. I will literally take off my shirt and act like a monkey because my kid thinks it’s hilarious. You would think I was rehearsing motion capture for Rise of Planet of the Apes. I’m method.

When kids need to be tossed in the air and caught, who do you turn to? Dads. Until my son is tall enough to get on the amusement park attractions, I am the ride. Roughhousing, horseplay, monkeying around… I will play the same repetitive game for as long my son is laughing and squealing. Or until he gets hurt.

As for my least favorite thing? I’m not sure if it’s gender specific, but I usually have to take on the role of Stern Parent. My wife is reluctant to deny our son anything, e.g. pacifier, TV, new toys, sweets. For some reason it always falls to me to be the bad cop.

CAM:  What is the one parenting task that you couldn't do (or, perhaps would never do) without your wife?

DC:  Oh that’s easy: buy our son clothes. Dads have no idea what size their kids are. Heaven help the dad who makes a solo mission to Old Navy. The shop clerk will ask, “What size is your child?” And dads will try and indicate the child’s height with a hand in the air, usually hovering around the beltline. If we spot another kid in the store – any kid – we’ll point to him and be like, “There! That kid! He’s about that size.”

CAM:  What inspired you to write a post about autism?

DC:  Ignorance. I knew so little about it. Plus my wife piqued my interest by obsessing over autism for months after our son was born.

(She still does. She’s a natural worrier. While pregnant, she’d fret about the neural tube test. When that came back clear, she moved onto things they can’t test for, like port wine stains.)

Also, I’m inextricably drawn to sensitive topics and tricky conversations. Autism is such a minefield – both within and outside the community. People untouched by it really tiptoe around the subject. And parents in autism circles can be hypersensitive to outsiders.

A recurring fascination is the well-meaning but grating comments made by parents of neurotypical kids. How often do you read on an autism blog a sentence that begins, “If I had a dime for every time I heard someone say…”?

But you can’t have constructive dialogue without the freedom to speak openly, honestly, and even offensively. This invariably leads to disagreements and disgust. But also empathy and enlightenment. Dolts like myself need the latitude to say stupid things – so long as it comes with a sincere invitation to correct and educate.

When I wrote about autism, I asked parents to vent about some rather nuanced frustrations and challenges. Their answers were among the most poignant, erudite, and profound accounts I’ve read anywhere. Months later I’m still both haunted and inspired.

I am not by nature an ass-kisser. And I am stingy with compliments. But parents of children with autism exhibit levels of tenacity and resourcefulness that are a unique testament to human potential. What distinguishes you is that unlike war veterans or Olympians or doctors performing triage, you didn’t choose to be heroes.

CAM:  I'm going to give you a lot of latitude with this last question... My readers are (well, there's a 99% chance that they are) sleep-deprived and chronically stressed-out moms of special needs children. As the token male on the blog today (tag, you're it!), is there anything else you'd like to share with all of us?

DC:  Wait, you mean it’s just me and a bunch of neglected women? Hi there. My name’s Jonathan. Um, what’re you wearing?

No, I jest. But speaking of token males and neglect: where are the fathers?!? Supporting a family comes with its own stress. But why is the blogosphere dominated by overextended moms? You should encourage your partners to guest blog (or at least leave comments) on a regular basis. Even if it’s just monthly.

Fathers have questions, opinions and insight, but it needs to be teased out a bit. And it could pay huge dividends in awareness and involvement.

The internet is an ideal format for this. If you write something that resonates, you can bask in the glory. And if you really screw the pooch, you can slink off in anonymity.

On that note, I’ll take that as my cue to scram. Nice chatting with you Angela!

Better You Than Me

When it comes to the spectrum, I’m maybe two degrees more enlightened than those who think all people with autism are savants that can count cards and toothpicks. (To be fair, Dustin did give a strong performance.)

My ignorance is no accident. People don’t gain specialized knowledge of hardship unless it’s necessary. Why would we?… to be well rounded? I mean, how much do you know about, say, Legionnaires’ disease?

As the father of a (neuro)typical 18 month-old boy, I am frequently astonished at how depleting and difficult parenting can be. And that’s with my wife doing most of the work. Maybe I’d be better equipped to handle parenthood if I were a 16 year-old Mormon fundamentalist prairie mom. But that comes with its own baggage.

So how do you cope when your child has autism? It’s not a rhetorical question. Parents untouched by autism are terrified yet preoccupied by its prevalence. It is perhaps unfair to show an academic interest when it’s not my kid flinging feces on the wall. But what do you want to me to say? “Better you than me”? (People with more tact than I will usually phrase this sentiment as “There but for the grace of God…”)

Basically, I stand in awe of the impossibly high hurdles that you must clear. Daily. Hourly. This minute. None of us can really fathom the patience and resolve required to raise a child with autism. We don’t know how to start the conversation, mostly owing to awkwardness, ignorance, or superstition. And frankly it’s hard to even tread here without sounding like an emotional tourist.

As you’ve read this far, I’m hoping you’ll address a few burning questions. They are compiled from near-complete ignorance. But there ought to be a way to gain perspective without fear of tripping over taboos.

Your answers will not herald an era of understanding. They will not put an end to people’s silent disapproval or blatant staring. But you’ve long since learned to ignore fools. These are just for me. Accordingly, I’m calling this brief questionnaire:

“Stop Staring and Finish Your F*cking Onion Blossom”

 1. What do your non-nuclear family members fail to understand about your child, despite repeated explanations?

2. If you could fire a magic bullet at anything related to autism, where would you aim? E.g. health insurance companies, educators, spouse, legislators, me (although technically I am unrelated). And don’t get too trigger happy, Rambo – you only get one magic bullet.

3. Is there a hierarchy among parents based on where along the spectrum your kids are?

4. What does your peer group commiserate about that you’d never share with outsiders (were it not for the relative anonymity of the internet)?

5. Which parents do you look at and think “Better You Than Me”? E.g. parents of a) paraplegics, b) Siamese twins, c) young republicans, d) albinos, e) kids with Down syndrome, etc. Hmmm… the question, while sincere, could be phrased more sensitively. But you’re an expert at handling inappropriateness.

Use the comments section to answer any or all of the above. Because y’know… you have so much free time on your hands.

Guest Post & Interview: Regarding Caroline

Today I am very lucky to have Rebecca from Regarding Caroline with me!  She graciously agreed to do an interview and is also allowing me to share one of her posts. It is a must read!

CAM:  Rebecca, I wanted to sincerely thank you for taking the time to chat with me. I have to tell you that I found out about you and your site through some Facebook friends who were madly posting links to your site the day you posted, “That Would Never Be My Child…” They were right to be sharing your post! You really drew me in as you talked about how you were never going to have that child or that house. I understood it also as not wanting to be that mom. You captured my attention, for sure.

As I continued reading, I found myself nodding my head in agreement all the way through. You spoke about everything so completely and honestly, without judgment or negativity. That is why I felt compelled to contact you to get your permission to post the content on my own blog. My readers needed to see it. I am so grateful that you are giving me the chance to share your advice and a little bit about you and your daughter.

I’d like to start by asking about how things are going at your house right now. How is your family doing?

Rebecca:  Well, first of all thank you for your generous compliments!  Things at our house are going well.  Caroline is 5 and in mainstream Kindergarten with an aide.  She’s such a happy girl who truly loves life.   

There are two ways I look at our situation.  On beautiful days, when the sun is shining and everything is happy, I think about how lucky we are.  For a long time, I doubted that she would ever speak.  Like so many parents, I prayed, “Please, let her talk to me and I won’t ask for anything else.”  I’m grateful that my prayer was answered, but still, on those cloudy, dreary days when we’re stuck inside working on what feels like the same goals we’ve had forever, I’ve been known to forget that promise I made and start to feel sad about all the things she can’t do, such as have a conversation with a friend. We always want to get to that next step with our children, even if they’re typical, which is good, because it keeps us motivated, but also so important to remember from where we came and count our blessings for what we do have.

When she’s not “herself” it always means something is medically wrong.  Recently, she had a rapid onset of new OCD type behaviors and irritability.  With the help of a specialist, we learned that she’s dealing with PANDAS.  It’s been a whole new journey of discovery and healing.  PANDAS is an autoimmune disorder that affects a large percentage of children on the spectrum, but I’ve found that many people are still unaware of it.   After seeing how much Caroline improved with treatment for it, I’m going to have to get the word out!  For her, when we treated the inflammation caused by PANDAS, her eye contact and engagement profoundly improved and other typical ASD traits decreased.  It makes you wonder how many other children on the spectrum could also improve.  So overall, Caroline is doing well.  Thinking about how hard she works to attain what comes easy for most kids, makes us very proud parents.

CAM:  Just a quick note on this – PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. If you are interested in learning more about what happened with Caroline, please visit Rebecca’s post about PANDAS. I also wrote a post about these issues that includes a link to a scientific case study about PANDAS. OK, back to questions...

In Washington State there is insurance discrimination against the autism diagnosis code, which means insurance companies can get away with not paying anything. It’s commonplace and tragic for families like mine. Does insurance cover any of the treatments for your daughter? Do you have any tips on how to pay for treatments?

Rebecca:  We’re fortunate that we live in one of the states that have mandates for autism coverage.  Here in Illinois, insurance must pay for $36,000 of medically necessary autism related therapy each year.  The majority of Caroline’s speech, OT and PT are covered.  It’s important to have a prescription for the services and to use the right codes.  In the beginning we received many denials, but once we got those initial claims paid, we haven’t had problems.  The National Conference of State Legislatures website has a helpful page that outlines each State’s autism coverage requirements, in case anyone is unaware of what their State offers. (http://www.ncsl.org/?TabId=18246)

CAM:  Like many of us warrior parents, you probably have your PhD in vaccines from Google! Do you have any sort of estimate on how much research you have put into the topic of vaccines?

Rebecca:  That’s so true, and it’s too bad we can’t print out Google diplomas after we reach a certain number of hours logged on a topic!  The nice thing about the internet is that it allows us access to scientific journals, Pub Med and sites that allow for serious research into the topic.  The type of research even my former law school professors would approve.  Often times, us parents aren’t just reading the sites that report the stories, we’re reading the research itself.  Research that most pediatricians don’t even know exists, which as you know is the frustrating part!

How much time I’ve spent varies widely.  Right after her vaccines, when I first noticed changes in Caroline’s behavior, I researched them every night until I was exhausted.  I was actually looking for articles to prove that vaccines couldn’t have caused the changes, but I couldn’t find any.  All I found was more and more proof that they did.   I felt so sad and guilty that I had to let it go for a while and start focusing on recovering her.  I took all the time I was spending and put it into researching biomedical treatments.  Then, after she started recovering, and enough time had passed, I was able to look at it again.  Now, I keep up to date, reading new reports as they’re released, but still spend more time researching biomed and educating others.  

CAM:  Have you ever spoken with your daughter’s pediatrician about her vaccine injury? If so, what was the response?

Rebecca:  Our situation is unique because the pediatrician who gave Caroline her vaccines moved away just after her last set, at 12 months.  The pediatrician who took her place has never given Caroline a single vaccine.  She has two children herself who developed seizures after their MMR vaccines, so for her third child she delayed it.  Yes, you heard that right, DELAYED.  That’s how strongly Pharma has convinced these doctors and how little of their own research they do.  She admits she has not read any independent research.  I have given her some and I hope it gets through.  Who knows, maybe like so many doctors with vaccine injured children, someday she’ll become an alternative practitioner. 

The pediatrician who vaccinated Caroline after my continual questioning is now in Minnesota.  Just last week, I requested an email address to get in touch with her because I wanted to send her the blog.  I think she deserves to know.

CAM:  Another note – If your child has experienced a reaction to a vaccine, please contact your doctor and ask them to report it to the VAERS (Vaccine Adverse Event Reporting System) database. Vaccine injuries are notoriously underreported, so if you see any behavioral or physical changes following a vaccine, it is important to get those documented so that you retain your rights to access the vaccine court, should it be warranted. Now, here is the last question.

If you could boil down your experience into one nugget of wisdom, what would you like to share?

Rebecca:  Wow, that’s a tough one.  If I have to choose just one, I’d say “Stay the course.”  It seems that sometimes parents try biomedical treatments or the GFCF diet briefly and think, “Well, that didn’t work.”  Almost as if they don’t want it to, because, well, honestly, in the short term, it’s easier that way.  I know the feeling well!

The problem is that many of the things we’ve done with Caroline have resulted in only subtle changes, but over time and combined with others, they amount to a remarkable difference.  Miss a step or two, or three and she would not be where she’s at today.  An example is how many children need to also be soy free or even grain free for “the diet” to help.  If those things are not tried, an opportunity for healing and recovery might be missed. 

To be sure I don’t ‘abort mission’ too soon, I try to understand the science behind what we’re doing.  Knowing why something should work helps me to be more invested in it, increasing the chances I’ll stick it out and ultimately that Caroline will benefit.   

CAM:  That is excellent advice! I, too, have seen many families give up on new things too quickly. I think it's hard for parents to be patient because it seems like we are all in a rush to survive our current crisis, whatever that may be. We want to see positive changes yesterday! It can be very hard to have a little faith in something when the changes are slow and subtle. This is where good record-keeping or journaling can help you understand where your child was before, during and after a new treatment.

Before I launch into your post, I wanted to share my absolute favorite thing you said:

“That would never be my child,” was the rationale that resulted in my ignorance. An ignorance for which I paid an incredibly steep price. The life of my child was changed forever. Much of her childhood has been spent seeking recovery and the guilt I feel will never be lifted.

Rebecca, your words mean so much. I can only hope that more people will take those words to heart as they make choices for their children. Thank you for being here today.  

Rebecca:  Thank you for taking the time to ask such thoughtful questions and for sharing our story!

CAM:  Please visit Regarding Caroline to learn more about Caroline’s journey, get some great links, watch Caroline’s recovery video, and much more. You can also “Like” her page on Facebook.

That would never be my child...

Although Caroline is 5, it seems like only yesterday I had a life that was my own and was so blissfully unaware of the demands of motherhood, that when witnessing a screaming child in a restaurant I'd think, that would never be my child.

And when I was pregnant, visiting a friend's house where dolls and toys were strewn about every room, I insisted to myself, that would never be my house. In fact, I didn't want colorful, plastic anything. The thought of a high chair disrupting the clean lines of my stainless and glass dining table caused me tremendous anguish.

Needless to say, I've come a long way since then... and I have a house overrun with toys, games and stuffed animals to prove it.

So "Why is it," new moms often ask, "that they don't tell us what it's really like having kids before we have them?"

Honestly, I can't say no one did. People do, we just don't listen.

We're too busy living our fabulously free lifestyles to begin to contemplate what true sleep deprivation actually does to one's mind or to comprehend how it will feel to have the 60 minutes we spend getting ready dwindled down to 5 (if we're lucky).

We may hear the words our friend is saying - but subconsciously we think - that would never be my child. My child will sleep through the night and be easy, beautiful and perfect.