Seeing the Light

Seeing the Light CradleRockingMama.com

February was a dark time for me.

The diagnosis of Autism really rocked my world. Not Jed’s diagnosis, but my unofficial diagnosis. Maybe that sounds strange, but it’s undeniable that I accepted Jed 100% as-is and had no fear whatsoever about his future, while simultaneously struggling to accept the same diagnosis for myself.

And I’ve been very alone in going through it. My family is wonderful and incredibly supportive, but they just didn’t understand why I had any issues with this at all. To them, nothing changed. I’m still the same person. I still have the same great life. What does it matter that there is now a term to explain some of my differences? Does it change anything?

I recognize that they’re right. It really changes nothing.

Except…it changes everything.

Only I couldn’t figure out how to explain it to them. I wasn’t even sure I understood it, and with our lives of constant strain, stress, and “expend all energy just staying afloat”, finding time and space to process this news was impossible.

So February was hard. Really hard. I thought, at times, that I was on the verge of a total nervous breakdown.

Fortunately, I’m almost completely out of the dark now. Once again, I have the Ladies Prayer Retreat from my church to thank for my rejuvenation. Even though it only lasted 21 hours, it would be impossible to list all the amazing things that happened there. Suffice it to say, my spirit was boosted beyond my imaginings.

Beginning to see the light enabled me to finally start making some sense of my troubles about the diagnosis. I think I finally understand why it has shaken me so much, and I’ll do my best to explain it here…just in case anyone else is going through this sort of thing.

I have a few analogies to try and explain it. The first is to say, imagine if, at 38 years old, you suddenly learned that you had been adopted. Your life wouldn’t change; you’d still have the same family, job, personality, etc., but somehow, one of the basic foundations of your life is completely changed and everything feels off kilter for a bit as you adapt to the news.

That made me think of a house with foundation issues. I watch HGTV on layovers, and sometimes they’ll show a house with a foundation problem. The crew goes underneath the house, replaces rotted beams, props things back up, and it takes weeks to do properly. When they’re done, the visible part of the house often has cracks in the sheetrock and sometimes in the floor that need patching. After patching, though, everything is as good as new – or even better than new.

Realizing I have Autism was like discovering I had a foundation problem in my “house”. If it takes weeks just to fix a house, I think it is understandable that I needed some time to let things shift around and re-settle, and then patch up anything that needs patching.

One fantastic lady at the prayer retreat told me that she imagines my recent discovery probably feels a lot like the first time watching “The Sixth Sense”. (This might only really make an impact on those of us old enough to remember seeing the movie when it first came out, before everything in the world moved so fast that the ending wasn’t spoiled for us before we saw it.) You watch the whole movie, and then – BAM! – the ending comes and suddenly you have to sort of re-evaluate the entire movie based on the twist ending.

That particular analogy really hit home. That’s almost exactly  what I’ve been feeling like! Like there was a big twist in my life that didn’t really change anything about how my story unfolded, except that now I had to re-evaluate my story because it shed an entirely new light on the whole thing.

I needed time to process and adjust. My life doesn’t exactly allow for a lot of leisure and contemplation. Is it any wonder February felt like a big black whole of emotional confusion?

I’ll give an example of one of the convoluted thoughts that has been passing through my mind the last month or so. My whole life, I’ve struggled to understand people. I mentioned making getting along with people and understanding social situations a “special interest” of mine, and that is true.

What I didn’t say is this: despite all my efforts to do this, I am still often completely baffled by human beings. I still often feel like an alien, or a person from a different era, or in some other way fundamentally “weird”.

I also am exhausted by it. I always have been.

My family and friends will vouch for the fact that I am clearly invigorated by interacting with people. What they don’t know is that for every social interaction that invigorates me, at least twice as many social interactions leave me desperate for solitude and time to decompress.

People wear me freaking out. They’re SO illogical and just…bizarre. I don’t get it. Trying to understand it and navigate that world leaves me drained. The social interactions that charge me up in a positive way are always with people who are – above and beyond all other things – honest. Honest about their own lives. Honest about their thoughts and feelings, even when they realize it makes them “look bad”. Just, people who don’t lie about reality. They don’t have to be right, or even agree with me, but they have to be trying to find the truth. Those people invigorate me.

Those people are not as common as you might imagine, so I do have a hard time with most social interactions.

I do really well on a superficial level. I’m a Flight Attendant, after all! I bet money that the great majority of the people I take care of and/or work with on the plane would not think there was anything unusual about me in the slightest, social skills-wise.

But try to take it to a slightly deeper level, try to have more than a ten minute conversation with someone, and I’ll find myself either buoyed or drained by whomever I encounter.

This last month, I found myself wanting to just say “to hell with it”. There are a couple of people with Autism who write books and blogs that I’ve been reading lately, and one of them wrote that he discovered, after his diagnosis, that while he wants the world to help accommodate people with Autism, he also wants people with Autism to understand that they must also attempt to engage the world on “the worlds terms”. He’s right. It takes two to tango.

But y’all, I’ve been TRYING to engage the world on “the worlds terms” MY ENTIRE LIFE and I STILL feel exhausted by it!

Knowing now that I have Autism made me feel, for a while, at least, like saying “You know what? This is who I am. This is how I am. Screw the world. NO GUILT.”

That was during the dark days. Now that I’m seeing the light, and have had some time to process and ‘patch’ things, I have a slightly different perspective.

Before diagnosis, I always felt like there was something wrong with me. I felt guilty and ashamed that I couldn’t get along with people better than I did. During the dark days, I felt like I was justified in retreating from humanity and shooting it all a big ‘middle finger’.

Now, I know there isn’t something wrong with me. I know I’m just wired differently. Some people are the kind of people I can understand, and the great majority are the kind I cannot. Nothing wrong with that. It just is what it is. I’ll still try to talk to people and make friends, and where I can succeed, I will.

That’s how I’ve always operated, truthfully. The difference now is, when I cannot succeed, I won’t feel guilty or ashamed. I won’t feel badly in any way. I won’t make myself feel inferior. I’ll just shrug, and completely blow the other person off with no guilt.

I have a feeling this will be a very liberating approach for me.

And you see, y’all? That’s just ONE aspect of my life that had so much emotional baggage attached to it that I’ve had to sort through the last month-plus. That’s a lot of baggage to sort through!

I felt compelled to do it, though, for Jed. He’ll never accept himself if his mother, who has the same diagnosis, can’t accept herself. 

I tried to explain that to my friends and family, and I did it poorly. I always made it sound like I was trying to find ways to help Jed by evaluating what helped me over the years. At first, that’s what I truly believed I needed to do. They naturally had the rebuttal of “even though you have the same diagnosis, you’re not the same people. The things that helped you might not help Jed. He’s his own person and you have to help him on his level.”

They were absolutely right, but I still found myself arguing with them. Now I know why. We were both right. I just wasn’t being clear about what I meant.

I didn’t need to sort all this out to discover what helped me in order to help Jed. 

I needed to sort all this out to discover how to accept myself AS Autistic, so that Jed could see me live that example for him. And THAT is exactly how I can most help my son. 

I’m not done sorting. I have a feeling it will take a while. But the devastating initial reaction part is over, and I am finally seeing the light in life again. So from here on out, I think it will be easier.

Or at least, I can hope.


By the way, I catch myself cringing when I write that I have Autism. Technically, Jed and I are, in fact, Autistic. That’s what the new DSM-V says. Even though we got our diagnosis after the official terminology change, I find myself wanting to use the word “Asperger’s” to describe us. I feel it is a much more accurate description of what we deal with.

I always try to be accurate in my writing. I try to use the correct terminology whenever I know to do so. So I’ve been using “Autism” every time I want to write “Asperger’s”.

My problem is that I feel the correct terminology is inherently incorrect. I feel “Asperger’s” is the correct descriptor for us. So, from now on, I will describe us as Aspergergian instead of Autistic. Please understand that I know the official, correct terminology. It’s just not my fault that the official, correct terminology is improperly descriptive!


Has anyone else been blindsided by an Asperger’s/Autism diagnosis and had to process that news? How long did it take?

Autism Stigma: Did She Really Just Call Me Stupid?

Autism Stigma Did She Really Just Call Me Stupid CradleRockingMama.com

Sharing about the autism diagnosis for my family was scary for me. I clearly had nothing to fear; I am completely blown away by the HUGE outpouring of support you all gave my family and myself! It’s going to take me days (maybe weeks!) to investigate all the books, websites, groups, and other resources you sent in response to my call for help.

I can’t possibly thank you all enough. 

Unfortunately, while my “tribe” has proven unwavering support and encouragement, I have already experienced the “autism stigma” firsthand.

Our doctors appointment was a week ago Wednesday. I left for work the next day and flew through the weekend. On Saturday, a mere 4 days post-diagnosis, I had an unfortunate encounter with a co-worker.

Things went smoothly enough throughout the flight. I found a passenger who was very nice and struck up a conversation. She soon revealed that her 2 year old son has autism. Naturally, I shared our recent diagnosis and we engaged in a thrilling conversation about raising children with autism. It was SO nice to talk to someone who is also newly diagnosed!

When we were landing, I took my assigned jumpseat and joked with my coworker. “This flight needs to be about 4 hours longer so I’d have enough time to talk to that awesome lady!” I said.

She laughed. “What were you talking about?”

“Well, her son has autism, and my son and I were just diagnosed last week.”

“Really?” she looked at me intently. “I’d never have guessed.”

She looked surprised. I shrugged. “I know it doesn’t seem like I have autism, but believe me, there are a lot of things I struggle with, especially as a kid. I’ve learned a lot about functioning as I’ve grown. The best part is that now I can help my son, though.” (Yes, I know I wasn’t technically diagnosed, but I was trying to keep it simple for conversational flow.)

I thought it was a nice little “awareness raising moment”.

We landed and got to the gate. A passenger raced to the front to deplane first. While standing there, waiting for the gate agent to open the door, my crew member started chatting with him. Their conversation was a tad confusing to me; it was almost like they knew each other, but then it was clear they didn’t. Then I thought he was another airline employee in plain clothes, until he said some things that didn’t jive with that theory.

Finally, my curiosity couldn’t take it any more. I asked him what he did for a living.

He just looked at me with big eyes and an incredulous look on his face…and suddenly I realized: we had Federal Air Marshall’s on our flight! I hadn’t forgotten, but I hadn’t recognized him at that moment. (In case you don’t know, they travel incognito and we are NOT to “break their cover” unless absolutely necessary.)

“Ohmigosh! I’m sorry! You aren’t sitting in your seat any more so I didn’t recognize you! People look different standing up.” I laughed. “What can I say; I’m slow, but I get there eventually!”

We all laughed. He put his hand on my shoulder and joked with me. “That’s okay, the world needs slow people, too.”

It was good, harmless joking and fun; poking fun at myself for having a slip of memory and coming across as a goof. We were all relaxed and laughing, until my fellow crew member said, “You’re right. We were actually just  talking about her being slow.”

—SCREECH—

Okay, there wasn’t actually a screech. The conversation didn’t actually stop. The two of them continued to chuckle and chat. For me, however, there may as well have been an actual record-screech sound as my mind and body seemed to come to a total stop.

She said…what? No…she couldn’t have! Maybe she was referring to how tired I’ve been lately? But no, I didn’t tell her that I haven’t been sleeping well lately and feel tired. She did  say that! She was  that audacious!

She called me “slow” because I told her I have autism.

When the Air Marshall and I said what we said, we were referring to me being “slow to catch on”. That’s not anything inherently bad or derogatory.

There are several innocuous reasons a normally quick person might be “slow to catch on” to something. Maybe they’re tired and not thinking clearly. Maybe they’re stressed out and their brain is shooting in a zillion directions at once. Maybe they’ve got kids yelling at them while trying to cook dinner and schedule a doctors appointment on the phone and they can’t process one.more.thing. right then.

What my crew member said, though, was saying that what we were talking about earlier – autism – was the reason I was slow. The only way to interpret that is that this person thinks being autistic means being “slow”. 

Now, if someone says a person is slow because they’re tired, that’s not really an insult; it’s probably a statement of fact. The assumption is that the person is normally “quick” when they are not tired.

But to say someone is slow because of a permanent condition is to imply that their mental faculties are not as high on a day-to-day basis. Saying someone’s mental faculties are not very high on a day-to-day basis is simply a ‘polite’ way of saying someone is, well, stupid.

She thinks being autistic equates to being stupid.

And she flat out said it straight to my face.

Worse, she essentially said “Yep. You’re stupid. Your son is stupid. And the son of our passenger? He’s stupid as well. In fact, ALL autistic people are stupid.”

I felt like I was 6 years old again, back in grade school, incapable of understanding why people make no sense. They don’t follow the rules! They aren’t polite and kind! My Mommy taught me that you are supposed to have good manners and Be Nice. Thumper’s Mommy (Bambi) said “If you can’t say somethin’ nice, don’t say nothin’ at all.” These are simple rules! They aren’t hard to follow! But…kids aren’t nice. They don’t use good manners. They’re breaking the rules. I don’t understand this. I don’t understand cruelty. I don’t know what to say to it.

I don’t know how to BREATHE in the face of it.

I responded exactly  as I did when I was a kid. I felt like the ceiling was coming down on me, the walls were closing in, my vision was tunneling, and I felt my stomach flip and flop and shift around in my torso. I felt pressure building in my chest. I couldn’t make eye contact with anyone. I couldn’t even look at anyone’s face. I wanted to retreat and escape.

And even while I was feeling all those things, I knew I had to pull it together to finish doing my job. So I drew myself up, looked at the passengers deplaning, and plastered a smile on my face as I said “Bye! Have a nice day! Thank you for flying with us!” (Guess all that time practicing facial expressions in the mirror paid off.)

This was the only flight I had to work with this woman, so I didn’t speak to her again and hightailed it off the plane as soon as I could after the last passenger disembarked. I’d recuperated by that point, but there was simply no point in “calling out” her statement. We both had other places we needed to be, and no time to get into a conversation that would surely be heated and complicated.

Prior to getting the diagnosis for Jed, I was chatting with a friend who pointed out that the autism stigma  is bigger than the stigma associated with food issues. I didn’t really believe her, simply because I know parents of children with autism and I’ve dealt with many autistic children and their families on the plane, and I had never seen or heard anyone  say anything nasty to or about any of these people.

As I said, I’ve been immersed in reading about autism the last three weeks. I’d seen mention in these websites and blogs that the NT (neurotypical) world discriminates against ASD people; however, since I had never seen or heard any of it first hand I honestly thought these claims were perhaps a bit exaggerated.

Consequently, I hadn’t ever spent a moment of my time preparing myself to face such audacious, blatant, cruel discrimination and dismissal from the world at large. It caught me entirely by surprise.

I’ve now seen the autism stigma firsthand. It wasn’t exaggerated. It is real, it is casually and openly expressed, and it is painful. 

Now, the truth is? This encounter was with an ignorant, horrible woman whose opinion matters less than mouse droppings. I know that. The pain doesn’t come from the fact that one person in this whole big, wide world slung an insult my way.

The pain comes from two things: first, the obvious fact that I had a total “flashback reaction” to her casual insult. These last few weeks of reading, I’ve realized that one of the reasons I seem so “high functioning” today  is that when I was younger, I made ‘Figuring Out How To Be Normal With People’ one of my special interests. It’s a little unnerving to think back on the sheer quantity of time I’ve spent over the years studying social habits in humans. Consequently, I believe I’m pretty good at interacting with people now. To be flung 30+ years into the past, in terms of my ability to relate and cope, at a single utterance was off-putting and somewhat painful.

The second, BIGGEST part of the pain comes from the logical thoughts that followed: does this wretched woman’s brazen, nonchalant expression of discrimination and dismissal come from her confidence that this sentiment is the prevailing opinion in the (NT) world?

If so, my family and I are facing a battle I hadn’t foreseen. If so, this battle has surely already been waged for at least a decade by the families with autism that came before us; if they’ve made so little progress in that time, it does not bode well for there being a successful conclusion to this battle against ignorance before my son is old enough to be aware of it…and hurt by it.

The idea of Jed ever  being smacked down with such ignorant cruelty hurts my heart in ways only a mama can know.

The good news is, I don’t stay hurt for long. After the hurt comes pissed, then steely resolve. A plan must be made to handle such incidences in the future!

I’m usually quite quick-witted, but obviously I had a sensory overload and shut down in the face of this particular method of attack.

I think I need a social story to help me work out proper comebacks to situations like this. Anyone know of any they’d recommend?

And please, tell me this was an aberration! Please tell me the battle against ignorance has made more progress than this encounter would lead me to believe! Please tell me my amazing, brilliant son isn’t going to be dismissed this way his whole life! And if he IS, then please help me discover how to prepare him for it and guide him through it. Thank you!

Autism Lives Here

Autism Lives Here CradleRockingMama.com

When we left the doctor’s office three weeks ago, he sent home 9 tests for us (parents and grandparents) to fill out. I returned them 5 working days later. Our follow-up appointment was not scheduled until February, but to our surprise, we were called late one afternoon last week and told the good doctor had a cancellation; could we come in the next morning?

Absolutely!

We shuffled schedules, prepped food for a long day in town, and were ready to go the next morning.

Before the appointment even began, the doctor got to witness a typical Jed meltdown. I mentioned that at our first appointment, the receptionist took the kids down to play in the playroom so the doctor and I could talk undisturbed. They do have a very nice little playroom for kids, but I was confused. One of the other therapists has an office full of “kid stuff” right across the hall from the playroom; obviously, she primarily counsels children.

Jed and Zac were having a grand time playing in the therapists office when I gathered them at the end of the first visit. At the time, I didn’t realize this was a therapists office…I thought it was the playroom.

Before we went to the second visit, I explained to the kids that Daddy and I would be talking with the doctor while they played in the playroom. Jed, like me, thought the playroom was the big therapists office.

When we got there, we were led to the actual playroom. The therapist was in session on this day, and they couldn’t play in her office. Jed had a full blown meltdown over being told he had to play in the smaller playroom. His expectations didn’t match reality, and he simply could not adjust easily to the change.

This is normal for Jed.

We finally got him unhappily calmed in the smaller playroom and went to chat with the doctor.

He kindly and thoroughly went through every test we completed on Jed, explaining what the test was looking for, how it was scaled and rated, and what the results meant. Then he summarized all of the test results and his personal observations into a final diagnosis.

The verdict?

Jed has been diagnosed as Autism Spectrum Disorder, Level 2 “requiring substantial support”, AND Attention-Deficit/Hyperactivity Disorder, Combined Presentation, Severe.

Oh, and a nice little Oppositional Defiant Disorder thrown in for good measure. Fortunately, that one is deferred. The doctor believes that treating the other two conditions will correct the ODD without having to focus attention on it directly. Obviously, we will reevaluate over time to ensure that prediction proves accurate.

The doctor did not  diagnose Jed with SPD. He basically said that he saw it in Jed, but believes it is a symptom of the autism. He officially recommends Jed be evaluated by an OT for assistance with Sensory Issues.

Since the OT has already evaluated Jed and diagnosed SPD, my son now has as many labels as a Monsanto vegetable should  have.

  • Autism
  • SPD (Sensory Processing Disorder)
  • ADHD (Attention-Deficit/Hyperactivity Disorder)
  • ODD (Oppositional Defiant Disorder)
  • IgE to Egg and Peanut
  • MSPI (Milk/Soy Protein Intolerance)
  • Fructose Malabsorption
  • Salicylate Sensitivity
  • and a Partidge in a Pear Tree!

Yes, I’m making pathetic jokes. I’m desperately clinging to my sense of humor to avoid a total crying jag.

As a nifty bonus, the good doctor agreed with my self-diagnosis of Autism. While he was NOT evaluating or testing me at this time, the similarities between Jed and myself are so strong that he concurred with my self-assessment. He said the decision to proceed with testing and evaluation for myself was purely a personal decision, but that it was probably safe to say that I am on the spectrum somewhere. Where exactly on the spectrum I fall is unknown without testing.

Personally? I don’t feel compelled to pursue testing for myself at this time. It’s strictly a logical decision. I would LOVE to know exactly where I fall on the spectrum. (Autism, after all. I like to know the truth, the facts, and the rules. Ambiguity is intensely uncomfortable for me.) However, this testing and treatment for Jed is quite expensive. Any spare money we can come up with needs to go to helping my son, not towards satisfying my own curiosity.

Obviously I have developed coping mechanisms throughout the years that have enabled me to have a long term, successful career in a very people oriented job; a happy, stable, and satisfying marriage; and to be an excellent mother to my children. While I’ll be the first to say that I could probably benefit from some treatment/therapy, well, the truth is, I can do without.

My son cannot.

At the end of the session, the doctor said he would like to see us back to go over treatment options for Jed. Obviously, we are pursuing Occupational Therapy for him, but the doctor would like to speak with us about other assists: therapy and medication.

I have concerns about that.

While now it is quite clear I am autistic, in my teens I was diagnosed as Bipolar and depressed, and placed on myriad medications that completely whacked my body out. (I am NOT Bipolar, so lithium at any dose was toxic for my body. Antidepressants at the lowest possible dose completely numbed me out so I felt…nothing. No sad. No mad. No happy. No joy. I was numb. Not acceptable.)

I won’t even begin  to dissect the horrible counseling and therapy I’ve had over the years. <shivers>

Needless to say, while I have a very good feeling about THIS doctor, my overall experience with anyone who has a “psych” at the beginning of their title (psychiatrist, psychologist) has been overwhelmingly negative. Sending my son into that world at his tender age makes my blood run cold.

Not to mention my dislike of unnecessary medication for children. I stand by my earlier statements that sometimes medication is necessary for children. But until I’m convinced that it is absolutely necessary for Jed, I find myself reluctant to even consider “drugging” him.

Sigh. There’s a lot to consider, and much of it, I fear, is going to completely destroy my comfort zone. While I’m on record saying I dislike medication for children, being uncomfortable with psychotherapy for children, and will probably also dislike many of the other treatments presented to us, I truly don’t need any reminders that the ONLY thing that matters here is what is best for Jed.

I believe it’s pretty clear, by this point, that there are no lengths I will not go for my children. If that means weekly session at a psychotherapist for Jed and daily pill popping, I’ll go there.

Even if the thought of it makes my skin crawl.

I’ll do what is best for Jed, but I’ll make damn sure it IS the right thing before I sign on for any treatment plan.

Oh, and for a bit of levity, here’s a thought: maybe I need to go into psychotherapy as a career! I now have a really high track record regarding diagnosing my boys. I suspected ADHD years ago but was told not to worry. I’ve commented on ODD as a possibility. I spotted SPD. I figured out most of the food issues. Yeah, I missed autism, but overall?

I’m pretty good at this for a layman.

Damn. I hate it when I’m right. Sometimes. 

Now here’s a scary thought: how much MORE pronounced would Jed’s symptoms be if we hadn’t already discovered his food issues? We’ve already connected ADHD-type behavior to fructose, and ODD behaviors with salicylates. (The Meanies, anyone?) He would have been SO out of control that he probably would have gotten all these diagnoses earlier, but that means we would have almost certainly had to drug him at far higher doses than we will have to do now. OMG.

By the way, in case anyone is wondering how I’m handling all of this…well, I’ve withdrawn almost completely. I’m sort of obsessing on autism reading and research right now. Having this diagnosis is a simultaneous relief and sucker-gut-punch. Finally there is an explanation for MY ENTIRE LIFE! Finally there is an explanation for some of the struggles Jed has! Relief!

But now we’re Labeled. (I have one helluva story to share about THAT already!) Now we have MORE to deal with. Now we’re in a whole new Special Needs World that I need to navigate, while also continuing to navigate everything else we deal with.

There’s a part of me that is wondering how much more I can take. There’s another part of me that is part stubborn witch (ahem), part Uber Mama Bear, and part rebellious teenager that’s saying “Bring it, baby! I’ll take you all on with both hands tied behind my back!”. And there’s another part of me that is suddenly reliving my youth through repressed memories and feeling incredibly vulnerable and off kilter thanks to re-feeling those anxious fears and confusion I used to live with on a near constant basis.

I’m having to do a lot of mental shuffling and balancing to make sure my personal demons don’t interfere with ensuring Jed gets what he needs. That will get easier with time; I’ve proven I can self-heal, and that I can go to battle for my kids. It’ll be okay. We just need a little time.


Obviously, we have to confer with our doctor…but I’d love to hear any useful input from those who have walked this road before. ADHD meds? Yay or nay? What do we need to know? 

Waiting For Autism

Waiting for Autism CradleRockingMama.com

This post has taken over two weeks to write. It started as a place for me to just “brain dump” my feelings about Jed’s SPD evaluation, but then I tried to work those brain dump thoughts into a post to share.

I succeeded, somewhat, but it was still a grammar and writing nightmare. Plus, the subject matter…I just couldn’t bring myself to edit it any more OR post it.

Some new developments have come to light, however, and when trying to put those  thoughts to paper (so to speak) I discovered I simply couldn’t without sharing the thoughts I’d already written so poorly in this post. Therefore, I’m sharing it at the same time as the update post, so the whole story comes out in a way that is more true to life and real than it would have been if I’d been compelled to re-write everything from scratch.

Y’all, this has been a really, really, really, REALLY emotionally and mentally challenging three weeks for me. My head feels like it is going to explode.

Honestly? It’s on par with the summer we discovered FPIES for Zac.

Before you go any further, I want to thank you for being here through our whole journey. It matters to me.

For reasons I didn’t even understand until recently.


I’m writing this post somewhat prematurely; as of now, Jed has NOT been diagnosed as autistic.

However, at our psychiatric evaluation three weeks ago, the very nice shrink made it clear that much of what he saw and heard had him considering autism as Jed’s diagnosis. (Now you may understand why the stress of Tuesday may have triggered a mast cell reaction in me.)

It started out simple enough. I was only there to get the shrinks SPD agreement, after all. The OT has already said Jed does have SPD, as I suspected, and was ready to begin therapy with him two months ago. Since we can’t afford the therapy and need TEFRA coverage to get Jed the SPD help he needs, it’s necessary to have that diagnosis confirmed by a doctor.

That’s the entire reason I was there with the boys. Confirmation of SPD. 

I was busily stating my “Jed has SPD” case, fortified by my understanding that *I* probably have/had SPD, too.

I’m not sure if I’ve covered that before, but from the minute I started using online checklists to decide if it was worth having Jed evaluated for SPD, I noticed how frequently I answered ‘yes’ to the same questions. Over time, as I did more reading, I realized that I truly suffered from SPD as a kid.

I learned coping mechanisms as I grew up, and desensitized myself along the way so that now, I feel I am far more functional than I was as a kid. But I’m here to tell you, it was hard.

REALLY hard. Hellish, even.

Since I don’t want Jed to go through that hell, I was bound and determined the shrink would see SPD and mark his little forms and give me the ammunition I needed to convince TEFRA that Jed needs help. Because he does. And one way or another, Mama is gonna get her baby cub that help.

So I’m rattling off all the reasons why Jed and I have SPD (there’s a common genetic link for SPD, I’ve read, which is why I was trying so hard to make the case that I had it, too…genetic link=higher odds the good doctor will mark his forms, right?) and the nice man is listening to me, taking notes, and watching Jed wander the room, interrupt us frequently, start the early stages of a meltdown about wanting to take off his shoes (that I avert by saying he may take off his shoes but must keep his socks on), ask questions about everything, refuse to make eye contact with the man, climb, and wander wander wander…all those traits of Jed’s that I’ve noticed or not noticed consciously but have accepted in stride as “just normal Jed”.

Not that I just let him get away with all of it! I know interrupting is rude, and every time he does it I tell him “Sweetheart, it’s rude to interrupt. Next time you want to tell me something, say ‘Excuse me, Mommy’ and wait until I turn to speak with you”.

Know what that’s gotten me after years of constant repetition? Now he interrupts by saying “Excuse me, Mommy. Excuse me, Mommy. Excuse me, Mommy.” repeatedly until I stop talking and acknowledge him. And when I once again remind him to wait until I can speak with him he always says “I’m sorry but…” And he only says “I’m sorry” because I’ve repeatedly made him apologize every time he has interrupted me for the last three years.

And the shoe thing? The child loathes  having any clothing on his body at all. Shoes especially. Ever since he was old enough to remove his shoes by himself he has done so at the first opportunity. If we are in a store and simply stop walking for a few minutes I can often find him trying to take off his shoes. My admonishments that “Baby, we don’t take off our shoes in public” succeed when we are places where we will begin walking again shortly, but any place where we will be confined for a while (doctors offices, mostly) prove to be a meltdown moment if I refuse to let him take off his shoes.

I’m just happy I finally got him to understand that we don’t take off our pants and underwear in public. I’ll let him take off his shoes at a doctors office in exchange.

And the wandering? I just thought that was typical, curious 5 year old boy.

The eye contact? Can I just tell you how much we have worked on that over the years? Every day. Multiple times a day. Because, normally, I could care less if he’s looking me in the eye, but I’ve noticed that if I have something important to tell him, he often DOES NOT HEAR a single word of a sentence spoken directly to him from two feet away unless I’ve been able to get his attention turned to me. And when I ask him to look at me, he will look in my general direction. So I actually take his chin in my hands, aim his face to look right at mine, and sometimes even use the two finger “point at my eyes point at his” back and forth while saying “Jed, eye contact, buddy”, and STILL he cannot make his eyes meet mine for longer than a second.

Unless he is completely relaxed. Then I can get eye contact from him.

Until I have something important to tell him. Mommy saying something important=stress for Jed=no eye contact.

Mostly I attributed that to stubborn personality. My mom always said I had “selective hearing”, and I’ve often thought Jed was the same. ‘He doesn’t make eye contact’, I thought, ‘because to do so would force him to hear that which he does not want to hear. Stubborn kiddo!’

And climbing? He’s a natural monkey. The kid has been climbing since he learned to walk. He never learned how to break down baby gates or open them. He simply learned how to climb over them.

My dad always laughs and says “like mother, like son”, because I was a natural climber, too. There are pictures of me on top of the refrigerator at about 2-3 years old. I have similar photos of Jed at that age as well.

So climbing never worried me. That’s normal, right?

And I’m going through all my Reasons Why Jed Has SPD while Jed is behaving in this manner and the doctor is taking notes and we get to the part where he starts asking me questions.

And for many of those questions, sometimes whole sections of questions, I never stop nodding my head “yes” the whole time he is speaking.

“Yes, Jed does that. Yes, he does that. Yes, it’s impossible for him to do that.”

No doubts. No maybes. No sometimes. ALL the time.

And the kind doctor gently shared with me that in some of these sections the questions were relevant to ADHD, or OCD, or SPD, or autism.

And I started to feel nervous. 

Then Zac had a potty training accident and I raced him off to the bathroom to get cleaned up, leaving Jed alone with the doctor for just a few minutes. When we came back, the doctor had called his receptionist in to escort the boys to the playroom for the rest of the session so we could talk undisturbed.

After they left, we began a new question session. This one wasn’t so cut and dried. Many more “sometimes, maybes, and on occasions” in these answers.

And then the doctor commented on the manner in which Jed spoke to him while I was occupied with Zac. At first I was pleased; my charming son IS as well-spoken and intelligent as I thought! His vocabulary IS as advanced as I thought it was! His ability to communicate clearly with adults IS as good as I perceived!

Then the good doctor crushed my enthusiasm by saying “That’s not typical for children his age; that’s more common with autistic children.”

He went on to say that such precision in speech (because it wasn’t just the heightened vocabulary, it was the specificity of word choice that Jed used that piqued the doctors notice) was not common for most people regardless of age, but especially in younger children. Then he noted “You do that, too, mom.”

I sort of looked at him like he’d grown a third head; why wouldn’t one be purposeful in word choice? Words have meaning; to use an incorrect word out of laziness is just…wrong. How can you convey your thoughts if you use the wrong words? People won’t understand exactly what you meant.

And I told him that. Exactly like that. I even said lack of precision in thoughts was a pet peeve of mine.

And he smiled a little and nodded. Then he moved on.

He pointed out the behaviors he had seen in Jed (the ones I listed earlier, including one I didn’t mention: that he had instructed Jed where to sit and Jed sat there for all of 5 seconds before getting up and beginning his wanderings), behaviors I hardly even notice any more and certainly didn’t think were all too terribly unusual beyond “normal 5 year old, must work off the rough edges and teach him a little better”, and explained how all of those behaviors are common characteristics of autism.

And I felt the floor shift beneath my feet a little.

Then he moved on to ask more questions, and I was stunned to hear not only the questions but mostly my honest answers to them.

No, Jed never really engaged in imaginative play…until Zac started doing it and taught him how to. No, Jed doesn’t really interact best with kids his own age. He always gravitates towards kids older or younger than him at the park. Yes, he does fixate on things, though I can sometimes redirect him. Yes, he makes noise constantly. Yes, he is very literal. Humor is a little hard for him to understand sometimes. Yes, he does often laugh inappropriately at things and situations.

And when he was asking about being literal, I paused before answering, and the doctor said “For example, if you say to him ‘You’re a cute little pumpkin!’ Would he say ‘I’m not a pumpkin!’?”

And my jaw hit the floor. I actually said “Have you been following us? Because that exact, verbatim exchange HAPPENED about a year and a half ago!”

And the doctor just did that little smile again and said “No; that’s just a very common exchange for autistic kids.”

And when he said that? I felt myself tumble head over heels and spin around in circles and I started to cry. 

Autism? No! It can’t be autism! I said to the doctor, Jed – and I, for that matter – are far too social and interested in people to be autistic. Jed’s nickname is Mr. Charm, for crying out loud!

And he said that autism isn’t what most people think it is; he went on to explain about PDD, Aspergers and Autism, and how the new DSM-V calls them Autism I, II, and III.

And then he said that “Autism is about boundaries, and autism is about being outside of the boundaries of what people consider ‘normal’.

Then, in response to me pointing out that both Jed and I are very sociable people and that we love being around people, so autism just didn’t fit, he pointed out that being sociable doesn’t discount autism; many autistic people are very  interested in people.

They just struggle with how to interact with them.

I felt as if my life was a puzzle I didn’t know I was working and only realized when that puzzle piece slapped into place. It fit. Too well.  I’ve always struggled with interacting with people. Ask my Mom to tell you stories. Ask me, for that matter. And watching Jed on the playground is sometimes joyful, but sometimes, y’all, it’s downright painful to see him so desperately trying to figure out how to relate to the other kids. He’s just…out of synch somehow, and I could never figure out how to help him “synch up”.

And as I sat there, floored, he went on to talk about the therapies used for autistic kids and cited compression and brushing as two examples of what our OT might recommend for Jed.

Seizing on anything and everything that might disprove autism, I said “But Jed HATES being held tightly; I’ve tried that on him before and it makes him worse!” (Since deciding Jed has SPD, I’ve been reading and learning. I’d already heard about both techniques and tried compression on Jed.)

The doctor responded with some of the different methods in which compression is administered; heavy blankets, holding on to their joints, stretchy material hammocks…and I felt my hopes dashed as I had to admit: “Jed LOVES the hammocks. He keeps asking to go back to the therapy place with the ball pit and the hammocks.”

And the doctor explained brushing to me (which I’d read about but didn’t fully understand), that it is sort of like when you walk into a room with a gas leak and the smell is overwhelming but if you stay there for a while you stop smelling it. You become desensitized to it.

And I laughed and said “Well, I guess I ‘brushed’ myself like crazy my first year as a Flight Attendant!”

And he looked puzzled and asked what I meant and I had to explain that I cried on every single flight I worked my first year as a Flight Attendant. Sometimes I even had to lock myself in the lavatory to vomit or have diarrhea. Sometimes I had to just lock myself in the lavatory to have a few minutes alone to regain composure and bear myself up to face the flight again. And that after a year of experiencing that every single time I set foot on a plane, one day it just…stopped. I felt normal on the plane dealing with all those people and all that stress and change. Well, maybe not normal, but not completely incapable of functioning in the face of it.

And the doctor listened to me, and smiled, and he asked me more questions about Jed.

With each question he asked, I found I could speak less and less. I was too choked up, because now, when I answered honestly, I saw each affirmative or negative answer as another nail driving the autism point home. Eventually I was simply nodding.

And then he asked something that I can’t remember now and I found I had to clarify the answer. I couldn’t tell you what we were discussing, but the doctors response is burned on my brain: “Well, when Jed is in that situation, he’s feeling probably a lot like you did that first year of flying.”

And that, my friends, is when the big, ugly sobs broke out. 

Oh, the pain I felt at that moment! My precious little boy is feeling THAT kind of anxiety and fear and stress and “fight or flight” instinct?? NOOOO!!

I wouldn’t wish my first year of flying on anyone. It was hell. It was only my extreme pride, stubbornness, and refusal to fail that kept me in this job back then. (What can I say? I’m stubborn and persistent.) Returning home after less than a year was simply not an option for me, so I forced myself through agony every day. I was miserable and lonely and felt like I was losing my mind.

And he’s sitting here telling me Jed is feeling even a small portion of that at times???

And I’m wanting to not believe him, but suddenly in my minds eye I see flashes of things (because, yes, similar to Temple Grandin I often think in pictures): the expression on Jed’s face sometimes (where most wouldn’t see anything wrong but *I* can see the subtle tightening of his mouth and the fixed look in his eyes that I recognize because I’ve seen my own face on the mirror when I’m feeling that way so I know what’s going on in his head), the memory of the first time Jed said “I love you, too” after I’d told him I love him without prompting (because he never seemed to understand that you’re “supposed to” say that back if you love the person; we had to teach him that), the many times he has told me that he finds his day “easier to do when I know what we are going to do ahead of time”, the fact that we have used timers to help with transitions for almost a year now, the fact that I had to warn Jed that morning and  the night before about this doctors appointment because to have not done so would mean he would STILL be melting down, about how literal Jed is that we have to explain jokes to him frequently, how he uses punchlines out of context and YEARS after they were situationally funny trying to recapture that moment of humor that he “got”, that he never ever lies.

And worst, I’m seeing images of Zac, and how he has pretended to be a kitty cat for almost a year now, how he picked up on saying “I love you, too” all on his own, how he lies all the time, how he gets humor more than his older brother, how he never melts down over transitions – only has tantrums when he doesn’t get his way, how he can roll with things much easier than Jed…and for the first time I realized these behaviors of Jed’s are NOT typical.

And then I crashed again, because, as I’ve said before many times, Jed is like a mini-me. He is so much like me it’s not funny. And my parents used to say I had selective hearing. And I used to have to practice facial expressions in the mirror. And I found it almost impossible to make friends when I was little. (Still do, actually.) And a million other memories from my childhood rushed through my brain – some that I had completely blocked out, in fact – and I realized *I* am autistic, too.

That moment was total emotional overload for me. Shock. Horror. Sadness. Anger. Denial.

I didn’t want to believe it. I don’t want to believe it.

But it all fits.

It fits like a glove.

And I never saw it coming. 

I felt like I did when we got our FPIES diagnosis. We knew about food allergies and we were handling that just fine. Discovering that the food allergies were actually FPIES, though, was like being right and wrong all at the same time and feeling all off-kilter.

We knew about SPD, and years ago I suspected ADHD, and we were handling that just fine. But the good doctor explaining that SPD, OCD, ADHD, etc. are often symptoms of autism  was like finding out we were right and wrong all at the same time and feeling all off-kilter.

The doctor assured me he had not made an official diagnosis yet. The testing is not complete. He simply was pointing out some of what he had seen.

So maybe Jed does NOT have autism.

But I’m not banking on it.

I was raw when we left the office. My day was like walking in a fog.

But that night, I rallied a little bit.

Enough to call in for some reality checks.

First, the doctor had mentioned that he knows the nurse practitioner we see. The one I’m always saying we adore? One of the few medical people I trust? The one who agreed Jed needed an SPD evaluation in the first place?

So I sent her a message asking her about him. Is he good? Is he quick to jump the gun on diagnostics? Her reply? She’s known him personally for years. She and his daughter are good friends since high school. She only knows him personally, not professionally, but he’s a good man and everything she’s heard of him professionally is excellent.

Then I called an old friend from high school of my own. A friend who has two nearly full grown boys who are both autistic. This amazing woman raised autistic kids back when there was no internet and she managed to get these boys to a functionality that is so high, you’d almost never pick up on the fact that they’re spectrum kids. (You will if you spend any considerable time with them; but even then it’s mostly quirks you’ll notice.)

If anyone can see through a crap diagnosis (even an unofficial, “it’s not a diagnosis” insinuation), it’s her.

After two hours on the phone, she said, “Well, when we first started talking I was all ready to say this doctor is full of it, but now I have to say, I’m sorry, girl, but it sounds like he’s right about both of you.”

She even listened to my recitation of his “autism is about boundaries” explanation and after a moment of silence said “Dang! That’s probably one of the best explanations of autism I’ve ever heard!”

Not to mention that the reason we went to this guy in the first place is that the OT recommended him very strongly as a great diagnostician who would look for the truth and not what is convenient or easy to say. (The OT who was recommended by our beloved speech therapist that we adore and trust implicitly).

So the good doctor has been vetted. He knows his stuff. He’s a good guy and not a quack. 

And he’s probably right.

Even through my sick stupor brain fog of the first full week since that visit, every waking moment I’ve been reading about autism. I have lots of thoughts about what I’ve learned, but this is already way too long so I’ll wrap it up here.

I hope we are all wrong. I hope this post proves to be senseless ramblings. I hope I can come back and say “Oops! My bad! I was overreacting to some insinuations and seeing proof that isn’t really there.”

I hope I can be embarrassed that I wrote all this.

I just don’t think we’ll be that lucky. We are now just waiting for autism to officially become part of our lives…or not.

Back on the TED

Back on the TED CradleRockingMama.com

So far 2016 has made me yearn with longing for the return of 2015.

And 2015 was a really rough year for us.

Go, 2016!

The sad part is, the New Year started off great! I had to work that weekend, but I picked up a nifty 30+ hour layover in Miami Beach. Not a bad way to spend the first day of the year, right?

Darrel even flew out to join me. He dropped the kids with my parents and the two of us got to spend one single, glorious day laying on the beach in 83 degree weather.

Swimming in the ocean that day was the first time I’ve been immersed in water other than a bath tub in over 4 years.

We didn’t stay long; the water was actually very cold, and the beach was terribly cozy and warm, so most of our time was spent laying directly on the sand, side by side, quietly enjoying the ocean breeze, the sound of the birds and the waves and the people playing, and just genuinely re-lax-ing.

Y’all. It was heavenly.

I haven’t truly had even a moment of pure relaxation since before Jed was born.

I’m so perpetually tense, actually, that even in such idyllic conditions I only managed about half an hour of truly being relaxed before my mind freaked out, kicked into overdrive and started thinking again. “Why can’t I relax like this at home? I know a change in scenery can help you relax. Is it time to change up our home decor so I can manage some relaxation? Because it can’t be good for the kids to have such a stressed out mommy. But we can’t afford any home decorating and even if we could, it would just be a temporary fix because then I’d get used to it and it wouldn’t be relaxing any more.  And oh my God! I’m supposed to be relaxing right now and I’m stressing out about why I can’t relax at home so much I can’t relax here! Something is very wrong with me!”

To his credit, Darrel didn’t take offense at my brain running off without us, and we both laughed (somewhat ironically) at my predicament.

We decided we absolutely HAVE to get ourselves to the beach for as long as we possibly can ASAP. Our mental health desperately needs a vacation to stay healthy.

We came home on the 2nd and spent the next two days milling about the house, slowly and easily getting things that needed doing done, and just trying to maintain that peaceful, beachy feeling.

Unfortunately, our lives don’t really take vacations, even if we want to.

By January 3rd, I had started putting some fairly minor symptoms I’ve been having together and began a conversation with my FPIES/MCAD mommy friend/guru (the one who is helping me manage my probable MCAD until my specialist appointment in September) to get her input.

In the end, we both concluded that yes, I am low-grade reacting to at least one of the foods I am now eating since beginning food trials for myself.

It’s little things. (Somewhat TMI, actually, but…I’m gonna go for it anyway.) Nightmares. I’ve been having a lot more nightmares since November. I’ve also been having a harder time falling asleep and waking up feeling rested.

Gas. I’m back to having farts that could clear a room, much to my embarrassment.

A case of mild brain fog. I’ve been more forgetful and less “sharp” than I’ve been the prior three years.

The fact that my compounded dipenhydramine (Benadryl) knocks me out and makes me feel better the next day when I’ve taken it to help me sleep and NOT for any food reaction.

Hunger. Let me rephrase that. HUNGER. I’m constantly hungry, no matter how much I eat. I’m plowing through almost as much food as I ate when I was the sole source of nutrition for Zac via nursing, and my clothes are proving that. They’re starting to get snug, and by God, I WILL NOT BE FAT AGAIN.

Other than my panic over the hunger and tight clothes, the symptoms are subtle and not life altering. But put them all together, and they were a clear sign that something isn’t working right for my body.

Conclusion: I’m reacting. Actionable response: I’m going back on the breastfeeding TED.

Yay.

So last Monday, the 4th, I went back on my TED. It was very  hard to skip bacon and hot cocoa, lemmetellyou. But when food=pain and/or discomfort? It’s a whole lot easier to say NO.

Tuesday I knew we had a busy day. Jed’s psychiatric eval for SPD (Sensory Processing Disorder) was on the schedule, followed by my bi-monthly orthodontist appointment. It turned out to be one of the most stressful days I’ve had in a long, long time.

The shrink eval took 2 hours, and he ordered 9 tests for Jed. We don’t have a diagnosis for him, yet, of course, but I’m pretty confident the results will say SPD…and possibly more.

We waited two months for this appointment because we were changing insurance as of January 1st. Our old insurance would have covered absolutely nothing of this evaluation, and our new insurance was in network and would cover almost all of it. It seemed well worth the wait.

After the appointment, the receptionist had some bad news for me. Aetna is our new insurance carrier, and the shrink IS in network for Aetna…however, my version of the Aetna plan outsources their mental health benefits  to another company, and, you guessed it: the shrink is NOT covered in network with the outsourced mental health company.

Bad words bad words very very bad words.

All is not lost; even out of network our new insurance covers more than our old insurance does. But we’re still looking at close to $1,000 for this evaluation when we expected it would be under $100. Because, you know, we just canNOT get ahead. No matter what we do. It isn’t allowed, apparently.

We left the shrink and headed to the orthodontist. He put me in my “finishing wires”, which are the heaviest to date. After adding some rubber bands between the brackets, which caused me the first actual in-office pain I’ve experienced so far, I was informed that from now until May I get to come to the orthodontist every 5 weeks instead of every 2 months. Yay.

Jed had found a little boy to hang out with in the orthodontist appointment and when we left, he gleefully turned to me and exclaimed “Mommy! Now I have FOUR friends!” Which just broke my already wounded heart even more. I hate our limitations SO MUCH for what they have done to my children.

After that, I felt the kids and I deserved a break. Even though it was in the 40’s, temperature wise, I took them to the park. We weren’t alone; a good gaggle of kids were playing that day.

Shortly after arriving, I got a call from the OT office. They finished reviewing Zac’s evaluation and were ready to schedule him for therapy. They recommend three hour long sessions per week.

Now, I’m much more concerned about Jed’s SPD issues than I am Zac’s, and they only recommended TWO hour long sessions per week for Jed, so, what the what?? Why do they recommend so much more for Zac? The receptionist couldn’t say; we’ll have to talk to the owner/evaluator when we bring him in for his first appointment.

While I was on the phone with her, Zac started crying. This is nothing new. He cries very easily, especially when he doesn’t get what he wants. So I basically ignored it, considering I was on the phone trying to work out a therapy schedule for him.

Until I saw another mother come running up to him and start wiping his face. Uh-oh.

I ran over to him and saw that he was covered in mud. It was in his nose and mouth, caked around his eyes, in his hair…it was awful. I quickly told the receptionist on the phone that I would call her back and hung up before getting an answer, grabbed Zac and took him to the park bathroom.

They have sinks there to clean him up, you see. It being winter, though, those sinks had ICE COLD WATER in them.

Oh, yeah, he did not like that at all!

But after rinsing as much mud off him as possible, Zac shrieking the whole time, I stood him back on solid ground and he immediately looked up and said “Can I go play again, Mommy?” So, yeah, he was fine.

We went back outside and all was right with the world again, so I called back to schedule those OT appointments and apologize for hanging up.

Then we left the park, and Zac wouldn’t sit in his carseat. He finally screamed that he had a poopy diaper. I got set up in the back of the SUV to change him and discovered, to my horror, a diaper that looked identical to the diapers we were getting over a year and a half ago. Solid liquid, horribly mucousy, and possible blood.

Yeah. I pretty much wanted to vomit when I saw that.

His diapers since then haven’t been as bad, but they haven’t been good. Lots of mucous, which makes me just sick to my stomach and nervous, particularly since I have no idea what is causing it.

Tuesday was a pretty terrible, rotten, no-good day.

Wednesday I woke up feeling like crap. Sore throat and total body aches. I watched myself carefully and tried to take it easy, but there’s only so much “easy” you can take with two little boys running around. Every time I moved I got dizzy. It did not bode well for my return to work on Thursday. (Actually, I was scheduled to work Friday but had to fly up on Thursday morning.)

I prayed for a miracle, though, and went ahead and got ready for work and coordinated child care, anyway.

Thursday morning, though, I woke up with not only the sore throat and body aches, but also a head that felt like it was full of concrete, complete with runny nose, sneezing and coughing.

I called out sick and spent the day on the couch.

Friday, with Darrel home to be able to watch the kids, I went to the doctor. I have a bacterial sinus infection.

If I needed further proof that I was reacting to my foods, I got it. Pre-TED, I suffered from chronic sinus infections. I’m not exaggerating to say I had a sinus infection at least once every 4-6 weeks. Since starting the TED? Zero sinus infections.

Sinus infections are one of my “reaction” signs.

Of course, my MCAD friend expert tells me the stress from Tuesday could have triggered a mast cell reaction in my body, but I think it’s clear that the food wasn’t helping my physical situation.

The good news is that I’m able to at least try to be somewhat normal regarding treatment options. I decided to be brave and get non-compounded prescription medication for myself. Paying just $3 for a bottle of pills felt weird after the last three and a half years of dropping over $50 per bottle of something as simple as benadryl.

And when I came home from the doctor I found that Jed had used the confusion of my absence to sneak the leftover candy canes we hadn’t thrown away after his last reaction. He ate almost a whole box at once. He actually behaved okay throughout the day, though I think that was sheer will power on his part. I had busted him eating the candy when I got home, and he wanted to give the parental units no cause to take those candy canes permanently away by behaving like the Tasmanian Devil on crack. Sorry, buddy. Too little, too late. I already chunked the candy canes.

Oh, and by calling out sick? I’m losing a few hundred dollars in pay. My sick bank wasn’t quite big enough to pay for the whole trip I was scheduled to work.

I spent the weekend completely incapacitated, slathered up in peppermint EO’s, popping my antibiotics and dipenhydramine right on schedule, getting up only for bare necessities. Darrel did ALL the cooking and cleaning and child care the entire weekend. I was useless.

Today is Monday. I still feel like crap, but Darrel is back to work. I guess I’m going to have to rally. Somehow.

Yep. The first week of 2016 has found us back tracking my diet, me sick as a dog (really, how did I ever function with constant sinus infections? I feel like I’ve been run over by a truck!), Zac having mystery reaction diapers, Zac needing far more OT than we thought he would need, Jed sneaking food every chance he gets, Jed possibly having a worse diagnosis than just SPD, and our finances a good $1,000-$1,700 in the hole (depending on how many of those 9 tests the shrink wants insurance actually agrees to pay for).

2015? You can come back. I’m not liking 2016 very much at all.

Looking Back: 2015

Looking Back 2015 CradleRockingMama.com

I hope you all had a really excellent Christmas!

It’s almost the end of 2015, and I figured it would be good to do a little “year end recap” and update.

For starters, I’ve been rather quiet on the blog front lately, but that’s actually because I’ve been writing furiously elsewhere. Finally, after ruminating on the idea for a long, long time, I’ve sat down to write a book.

Well, to be honest, Thanksgiving and Christmas were sort of impediments to blogging, too, but I truly have been devoting as much free time as I can muster towards the book.

I’m very excited about it, but I don’t want to say too much too soon; with my crazy schedule, I have no idea when it will be finished. Stay tuned, though!

Meanwhile, things have been plodding along. We all seem to – finally – be over the cooties that attacked in September and long overstayed their visit. As such, we’ve moved on with food trials.

Darrel and I did the math a while back and realized that we spend $75 a month on our public water, and at least $60 a month on the safe bottled water for Zac. That’s $135 per month in water! $1,620 per year! That’s insane!

In the world of food issues, some things just get mentioned often enough that you know about them – even if you don’t really know about them. One of those things is the Big Berkey water filter system.

I decided to look it up.

Big Berkey’s are pretty cool, when you get right down to it. They come in different sizes and use anywhere from 2 to 8 filters, and you can choose from the original black filter or a ceramic filter. They even have filters for fluoride and metals!

There’s only one problem: corn allergic people report that some of them have reactions to the plain black filters on the Berkey’s. Most say the ceramic filters are okay for them.

Either way, this was going to have to be a trial for Zac.

When we bought our Berkey, the black filters were about $100 for a pair, and the ceramic ones were almost as much for a single one, so we decided that, in order to try to save money, we would trial Zac on the black filters first. If he reacted, we’d move on to the more expensive ceramic filters.

The punchline? When I was looking up the filter prices to make sure I gave the correct information for this post, I noticed that they have changed their ceramic filters and they are now $25 for a single one, making them half the price of the black filters.

Yuk, yuk, yuk.

Yet another slap in the face of my best laid plans for the year. Oh, well.

So the Berkey black filter trial has been underway since mid-November, and honestly? It’s confusing.

Zac has had no obvious reactions symptoms, but his poop is all over the map. Sometimes even within the same day he’ll have a perfect poop followed by a mushy, light colored, or even diarrhea poop.

We didn’t know whether that was just part of winter kicking our tushies or a sign of a reaction, but we’re plowing through. Now that we’ve bought the actual Berkey, our water costs will be almost halved if we can keep using it.

We’re also experiencing a bit of “food trial burnout”, I think. Or maybe it’s “I’m just worn out by all the extreme measures FPIES forces us to take”. I don’t know. But we’re almost desperate  for as much normality as will ever be possible in our family. Let’s face it, our ‘most normal’ will still be so far outside of most peoples ‘normal’ it isn’t even funny. Darrel even commented that he wished we could be like “normal health food nuts” instead of the way we are, that’s how ‘not normal’ we are.

I think we’re kind of pushing through on the water just because of that.

It would be really nice if the whole family used the same water all the time, so we weren’t having to keep track of whose water is whose, and have two jugs of water in the fridge that must be labeled constantly.

That kind of vigilance…it gets exhausting, you know? And after 3.5 years of it, well, we’re exhausted.

Sad, but true.

Since the water trial seemed to go well enough (the random weird poop notwithstanding), we moved on to a pea trial for Zac.

Peas. Sweet peas. Of all the veggies out there, that’s one of the ones that almost ALL kids like. Even at my pickiest as a child, I loved peas.

Zac refuses to eat them.

The first night we did peas, I actually made a split pea soup. He was chowing down, exclaiming “This is good, Mommy! I like it!” between huge bites…until Jed decided to be a picky 5 year old and proclaim (without even taking a bite of it, might I add) “I hate this. I don’t want it!”, whereupon Mr. Zac put down his spoon and refused to eat another bite.

Our rule is that you only get dessert if you eat your dinner, and while Jed eventually relented and ate a decent serving of his soup (while announcing between bites that “This really isn’t my favorite, Mommy”) in order to get his ice cream, Zac never relented. He didn’t eat his soup, and he didn’t get his ice cream, and he went to bed hungry.

And mad. Don’t forget mad. (He certainly didn’t let us forget it!)

The next day Darrel and I discussed it, and we decided that with FPIES, we can’t afford to continue to let Zac’s pickiness dictate food trials. Whether he likes the food or not is, at this point, immaterial. We need to get more foods in his diet, and we can’t afford to completely discount a food simply because he isn’t a fan of it.

Especially since sometimes his displeasure with the food is revealed BEFORE he even tries it!

So we’ve been sneaking peas into his food for the last 5 days. That’s not as easy as it sounds, but we’re managing. My next step is to puree it in a food processor and add it to foods that way.

He may not want to eat peas, but I will by God find out if his body can handle peas!

Then, I can put them on his plate openly, and if he eats them, great, if he doesn’t eat them, fine. At least I have something else I can put on his plate, and eventually, after seeing them often enough, he will start eating them, I’m sure.

Really, y’all. FPIES is just exhausting.

On the food trial front, I’ve been plowing through food trials for myself, too. I’ve added red bell pepper, carrots, bacon (!) and cocoa to my diet in just the last few weeks. Fortunately, I haven’t had any more horrible reactions, and also fortunately, I found my bottle of compounded dipenhydramine just in case I do.

The bacon is a source of extreme pleasure in my household. Ever since Jed had the Meanies from bacon earlier this year, we haven’t had any bacon for Jed. A few weeks ago I, once again, read every label on every package of bacon at the health food co-op (as I do every month or so, in desperation), and to my amazement found one that ADDS NO SUGAR!

The bacon is uncured, no nitrates or nitrites; simply pork, water, salt, vinegar, and celery powder.

And it tastes heavenly!

I made it for Jed and he loved it. The next time I was ready to trial a food, I ate a few pieces, too.

Oh. My. God. How have I lived without bacon for three years??

Having bacon back in our diets is a source of giggles every morning for me. Yes, I happy dance at the breakfast table, why do you ask?

Other than the bacon, Jed hasn’t been having new food trials, but he has been going through some “fine tuning” of his diet. Over Christmas, I made him some homemade marshmallows made of dextrose instead of sugar, and some seriously adulterated Fantasy Fudge. I also bought him some candy canes that have no artificial coloring or nasty ingredients in them.

We’ve learned that Jed, being mostly sugar free his whole life, just really can’t handle sugar.

He doesn’t get the Meanies, but he does get…stubborn. Borderline obstinate. Sullen. Almost angry.

And hyper. Did I mention hyper?

Yeah. The smallest amount of safe sugar for Jed and he gets a Sugar Rush From Hell.

We are now limiting him to 3 marshmallows a day. We tried to let him have one piece of the fudge in a day to see if he could handle it, but his attitude got so bad within an hour that we threw the rest of the fudge away. Too bad. It was a decent recipe. (I’ll try to share it with you, anyway, just in case your kids aren’t so sugar sensitive!)

The good news is that we now know it isn’t the cocoa. He’s had cups of hot cocoa made with just cocoa, stevia, water, and a little goat milk, and been perfectly fine! It’s only when we add dextrose or maple syrup to the cocoa that he goes wonky.

Darrel has been frustrated, telling me that I have to stop making Jed treats. It’s just so hard! I’d like my kids to have SOME kind of candy/treats for special occasions! And I’ve worked very hard to make safe treats for Jed over the years. Not being able to handle ANY sugar is just…frustrating.

On the plus side, not all treats are no-go items. Just the ones that are mostly sugar. (Of course, when I say “sugar”, I mean dextrose, maple syrup, honey, any form of sweetener except stevia.)

In the end, 2015 has been another fairly rough year for us. Financial issues really raised their head this year, but we’re coping. Zac gained 7.5 or 8 new safe foods (depends on if you count the Berkey water as a full pass or not yet). We started trying to get out of our comfort zone. We’ve learned more about Jed’s diet. We’ve discovered I have major food intolerances as well. We’ve weaned. We’ve taken a cool trip. We started homeschooling. We’ve been sick a lot. We’ve faced down copperheads. We’ve reluctantly accepted that Zac hasn’t outgrown FPIES at 3 years old (thank you, Oats!). We were robbed.

Somehow, though, we’re still putting one foot in front of the other, loving each other, and pushing our way through to the other side. And when I’m laying down at night with a cute little boy tucked on both sides of me, reading bedtime stories, I’m reminded that…all in all?

Life is pretty good. 

I hope it is for you, too.

Here’s praying and hoping we ALL have an amazing 2016!


Thanks for reading our story this year. I have some great recipes to share, so go ahead and subscribe now so you don’t miss anything! (Especially The Book! Well, when it gets finished! <wink>)

An Unwanted Dinner Guest

An Unwanted Dinner Guest CradleRockingMama.com

Thanksgiving did  turn out to be delayed for us; Darrel was still feeling miserable from his sickness so we postponed our family gathering.

Based on how Darrel felt, we really should have waited even longer, but he thought he would feel well enough to have Thanksgiving on Friday so we could still visit with my Aunt before she had to go home.

On Friday, though, he left my parents house early and came home without us, where he promptly fell asleep and stayed asleep for 16 hours.

Yep. Probably should have held off on Thanksgiving for another day or two. Oh, well. He’s a really good guy and wanted to try and make it work for all of us, and we all appreciated his effort.

He wasn’t the only one feeling rotten on Friday, either.

The whole family got up in the morning and had breakfast before we loaded up the car to head over to Grandma and PopPop’s house. The kids ate okay at breakfast, but after eating told me they were still hungry.

Jed said he wanted one of his pancakes. Zac said the same. I said okay.

Here’s the problem: I have to make two separate recipes of pancakes for the boys every time we do waffles or pancakes for a meal because of our conflicting dietary needs. Jed’s pancakes are poison for Zac, and Zac’s pancakes are poison for Jed.

Consequently, there’s always a TON of pancakes leftover after feeding them, which I always freeze. My unique little boys happen to think eating a rock-solid frozen pancake is the height of gourmet dining.

I know. Weird.

Thankfully, their two different batches of pancakes look very different; different color, different thickness, different sizes even, thanks to my desire to NOT confuse whose pancakes are whose.

I didn’t think anything of it when both Zac and Jed were wandering around munching on frozen pancakes as I gathered food together to take to my parents house for our Thanksgiving feast.

Darrel, however, even in his “not feeling awesome” stupor, looked more closely. I suddenly heard him say from the living room, “Zac, is that your pancake or Jed’s?”

Uh. Oh.

Zac happily announced “Mine!”, but Darrel insisted he show him where he got the pancake.

He took Daddy to the freezer and pointed directly to JED’S stack of frozen pancakes.

Nevermind that I always put Jed’s on that side of the freezer and Zac’s on the other side. Nevermind that they look completely different. Nevermind that he KNOWS all this.

He grabbed his brothers pancake anyway.

His brothers pancake that has OATS in it (along with a zillion other ingredients Zac hasn’t trialed yet, most of which are corny in some way).

Oy, vey.

Since he hadn’t eaten much, just nibbled on the edges, we hoped he had dodged a bullet and wouldn’t react.

Not so lucky. A few hours later, he started vomiting.

Poor Zac threw up three times on Friday morning, and barely ate any Thanksgiving dinner. He was perkier by the time we ate, but didn’t have much appetite.

That night, however, he was a hungry boy!

Ever since then, of course, his poop has been rotten.

We’d finally gotten him to remember to go to the potty when he needed to poop about 90% of the time; ever since Friday, we’ve had accidents.

Boo.

All in all, it was not a terrible reaction. He hasn’t had blood in his stool, nor any acidic diaper rash burns. He did vomit three times, but there was no dehydration or lethargy. I’m grateful it was a fairly mild FPIES reaction.

But still.

We’ve only managed to trial ground black pepper on him since AUGUST! That’s FOUR MONTHS of (basically) a food trial hiatus due to illnesses, pickiness, and reactions. I’m absolutely going nuts here! My child needs to trial more foods! I can’t do food trials in these conditions! ARGH!!!!

Oh, and to cap it all off, on Monday we had to run in to town to pick up our chicken feed delivery. On the way home we swung by the co-op to pick up some potatos and bananas for the coming week.

Jed has been begging for pretzels for a couple of months now. A Mr. Rogers Neighborhood retro episode he saw visited the pretzel making “factory”, and he’s convinced he needs to eat a pretzel.

I’ve looked and looked for pre-packaged pretzels he could have, to no avail. I’ve even looked for recipes for pretzels I could make for him, and found a couple of potentials, but haven’t had the time or energy to experiment with making them.

As has become usual for him at the co-op, he ran to the pretzels and asked if he could have every.single.bag.he.found.

As usual, I said “NO” to every.single.bag.he.found.

Until he held up one I didn’t recognize. I asked him to hand it to me. The ingredients were simple enough: spelt, malt, salt, baking soda, and soybean oil. Despite the fact that I know wheat gives him the Meanies, he has eaten spelt before with no issues. This is strange, of course, because spelt IS a wheat. But I didn’t know that in our early days of FructMal, and so I thought I was giving him a wheat-free muffin at the co-op whenever they had a vegan option available.

It is the ONLY store-bought bakery-style treat the poor child has ever had in his life. So he had eaten TONS of those muffins made of spelt before I learned they were wheat. Since he had never shown any reactions to those muffins, I decided to avoid spelt in general, but to not take away the occasional muffin from the co-op.

Looking at these pretzels, I figured a small quantity of them spelt-wise would not be a problem. The glaring problem was the soybean oil.

Jed has MSPI (Milk/Soy Protein Intolerance). Soy is kind of a no-no.

BUT. Some people report that soybean OIL is okay for their MSPI kiddos, and we haven’t had a soy exposure for…too long to even remember (I think it was before Zac was born!).

So a trial seemed in order.

I bought Jed the pretzels, made it clear it was a trial, and he happily began munching down on them in the car ride home.

Shortly after arriving home, I told him he had eaten enough pretzels for the day, and took the bag away, leaving him the few remaining on his plate.

A few minutes later, Zac came running up to us exclaiming “Now I love pretzels, too, Mommy!”

Yep. You guessed it. The minute our backs were turned, Zac snuck one of Jed’s pretzels.

(Head, meet wall. Bang here, please.)

Long story short, no vomiting ensued, but his diapers are now messier than they were before.

And then Tuesday morning Jed informed me that after eating the pretzels, he had a stomachache all evening (which would explain his horrible dinner appetite on Monday night) AND that he had a “diarrhea poop” just after he woke up on Tuesday. He said it was yellow and liquid.

You know what, y’all?

I am SO FREAKING SICK TO DEATH OF THE SIMPLEST THING IN THE WORLD – EATING – BEING SUCH A HARD CUSS WORD CUSS WORD CUSS WORD THING FOR MY FAMILY TO CUSS WORD DO.

So that’s that. FPIES was an unwanted dinner guest at Thanksgiving, soy and oats are evil and can kiss my lily white heinie, and I have to work up the courage to keep doing food trials for me. Because, did I mention it? Before Thanksgiving, I reacted to ROMAINE LETTUCE. Lettuce. Romaine. Nauseous for hours.

I hate food.

The Best Food Allergy Thanksgiving Tips

The Best Food Allergy Thanksgiving Tips CradleRockingMama.com

Thanksgiving is upon us again, and I honestly have nothing new to share this year. At least Jed and I have picked up a small dose of the cooties Darrel has now, so it’s very possible Thanksgiving for our family won’t happen this Thursday.

My parents would rather we not bring cooties with the turkey and pumpkin pies, for obvious reasons.

If we do pull off a Thanksgiving this  year, it will pretty much be a repeat of last year for us. We have a slightly larger menu to choose from now, but we actually did a pretty good job of putting together an allergy/FPIES friendly dinner last year so why reinvent the wheel?

However, I’ve shared some great food allergy Thanksgiving tips in the past, so I put them all together in one convenient place to make searching for help easier for you!

I hope this helps with any last minute Thanksgiving plans you may be trying to make.


For starters, there’s this little gem about how to survive Thanksgiving with food allergies and intolerances. It breaks down the options available to every food allergic family at this celebratory, stress-filled, guilt-laden time of year:

Surviving Thanksgiving With Food Allergies-Intolerances CradleRockingMama.com

Here is last year’s Thanksgiving Menu for our house, broken down into who is preparing what and when (just in case you need a few suggestions):

Thanksgiving Menu And Salmon Trial CradleRockingMama.com

If you’re traveling this Thanksgiving (or later for Christmas), you’ll want to check out this post on traveling with toddlers and preschoolers with food allergies:

Tips on Traveling with Toddlers With Food Allergies Updated CradleRockingMama.com


And some recipes you might find useful:

This pumpkin pie is DIVINE. And completely allergy friendly!

Pumpkin Pie & Crust Gluten-Dairy-Egg-Soy Free CradleRockingMama.com

Don’t let the foaminess of the photo fool you: this cranberry sauce is perfection. Just don’t use an immersion blender if you don’t want the foam!

 Homemade Cranberry Sauce cradlerockingmama

Sadly, we’ve discovered Jed cannot handle sorghum flour, almond flour, or maple syrup, so this bread is no longer safe for us. It’s more than sad, actually…it’s devastating! This bread is hands down the BEST gluten free bread I’ve ever encountered. It makes lovely dinner rolls, too.

 Gluten & Gum Free Vegan Perfect Sandwich Bread cradlerockingmama

Since we now have goat milk as a safe food, I can assure you the addition of some dairy does make mashed potatos better…but these dairy-free ones are still absolutely delicious, and very simple.

One tip? Add some fat to them. We dump some olive oil in ours now, and they’re TONS better!

 Dairy Free Creamy Mashed Potatos CradleRockingMama

It’s a somewhat unique preparation for asparagus, but it’s delicious. Try it as a novel side this year!

 Prosciutto-Wrapped Asparagus CradleRockingMama.com

If you’d like a great “snack” food to put out before dinner on Thursday, these “nuts” are a surefire winner. Hint: they aren’t nuts at all…they’re beans. But you’d never know it!

Allergy-Free Cinnamon Seasoned "Nuts" CradleRockingMama.com

For after Thanksgiving, when you’re up to your eyeballs in leftover turkey, here’s a suggestion: make this with turkey instead of chicken, freeze it, and drag it out in a few months when you aren’t sick to death of turkey anymore!

Dairy Egg and Gluten Free Chicken and Rice Casserole cradlerockingmama

Here’s another interesting appetizer for Turkey day, AND you could surely make this with leftover turkey for turkey stuffed mushrooms after the fact!

  Salmon Stuffed Mushrooms CradleRockingMama.com

My son LOVES this salmon pate, so don’t think it will be strange to toss this out as an appetizer on Thanksgiving.

However, I think this would make a delicious turkey pate after Thanksgiving to use up some of those thousands of pounds of leftover turkey!
Salmon Pâté Dairy Free CradleRockingMama.com


Feel free to peruse my recipes to look for non-traditional menu items if you’re unable to have or modify any of the ones I shared in this post. After all, nothing says you HAVE to eat turkey, dressing, and cranberry sauce on Thanksgiving! Remember that with food allergies/intolerances, creativity is often the only way we can eat.

Besides, Thanksgiving isn’t about the turkey. It’s about being grateful for the blessings of life. 

Even with our many issues, I’m surrounded by some very amazing people that fill me with gratitude every day of my life. No matter what we eat this week, I’ll be saying some serious prayers of thanks that I have the family I have.

I hope you do the same.

Happy Reaction-Free Thanksgiving, Y’all!!

TIMMMBERRR!!!

TIMMMBERRR!!! CradleRockingMama.com

The terrible spinach reaction was Sunday night, and on Wednesday I was scheduled to return to work for a really difficult 3 day assignment. I still felt sore and achy and NOT my best, but I wasn’t bad enough I felt calling in sick was an option.

Besides, thanks to vacation in November, that was my last work assignment for the whole month! It was good money, too.

So two Wednesday mornings ago, sore and achy, I went back to work.

Amazingly enough, by Thursday night I felt 100% again, even with flying 11-14 hour days on Wednesday and Thursday.

One more day of work and I could go home for a well deserved break.

And then…Friday morning.

I was in Orlando, Florida, scheduled to be on the plane at 6:22 a.m. Our van was scheduled at 6:00 a.m.

We arrived curbside at the airport at 6:08 a.m., and as I went to get off the van (which was one of those hotel vans that has three large steps to climb up), I fell.

I fell HARD.

From the top step.

At 3 feet in the air, I suddenly went from vertical to horizontal in a moment.

I landed directly on my left kneecap and the tip of my left elbow on the concrete below.

I lay on the ground, stunned, and couldn’t move for about a minute.

Finally I felt I could move, so my crew helped me up and, with one person on my right side and another on my left, they helped me hobble/wobble over to a bench.

Then I saw that the fall had ripped through my pants and heavy winter tights and my knee looked terrible.

Ouch CradleRockingMama.com

The pain in my elbow was quite intense, and within a few minutes had decided to radiate all the way from my elbow up to my shoulder and down to my fingers. I couldn’t move my hand or arm very much at all without extreme pain.

Paramedics were called. A nifty ride to the hospital followed.

In the ambulance, they checked my blood sugar and it was 49. Apparently that is low enough they didn’t believe it and instantly took it again. The second time it was 65.

Apparently still low. So they said they were going to give me something to suck on to raise my blood sugar.

Oh, hell, no!!

That meant some kind of hard candy or lollipop, and after 5 years of dealing with Jed, I knew that meant something loaded with high fructose corn syrup. After my reaction on Sunday night, the LAST thing I wanted was anything that even hinted  at fructose in my body!

So I got an IV glucose push instead.

About a minute after he finished pushing the glucose? My blood sugar tested at 253, and I was WOOZY.

I’ve been sugar free for over 3 years, y’all! My body didn’t know what to do with all that sugar!

It took a few hours to feel normal again, and in that time I was x-rayed and left to sit in a hospital bed alone for hours.

Fun times.

Turns out, nothing was broken or dislocated, so they released me with instructions to follow up with my primary care doctor at home.

Suddenly I was back in my ripped up uniform, escorted with my luggage (still limping and unable to use my left arm or hand) out of the hospital into the warm Orlando air, and left wondering “What now?”

Fortunately, I have to give my airline a gigantic “Bravo” in the way they handled my injury. I’d been receiving frequent phone calls from myriad company people while in the hospital, and when I called our crew coordination desk to arrange transport home, they knew who I was and my situation before I said more than my name!

A shuttle van was sent for me and positive space seats were arranged for me to get home right away.

In Houston, a supervisor met the plane to meet me and see if I needed anything at all.

Truly impressive.

Even more impressive is the fact that the flight I was supposed to work on Friday morning was only delayed by about ten minutes. Without me, there weren’t enough Flight Attendants to work the flight, so a cancellation was not out of the question.

Somehow, the operations people in Orlando managed to swap around crew members and find someone else to take my place in that brief amount of time.

Bravo, airline. Bravo.

Anyway, when I arrived home, my Dad and Darrel came to rescue me. Since my whole left side was basically out of operation, I couldn’t drive my manual transmission car home.

My parents kindly kept the boys another day at their house, and I slept 12 hours Friday night.

Obviously that weekend was not my most fun weekend ever. I’ve slowly improved, but even today (12 days after falling, in case you’ve lost track) my knee still hurts to bend and my elbow is still painful to touch.

Thankfully, the radiating pain and neck pain are gone, and I can use my arm and leg…I just don’t want to tap my elbow on anything or bend my knee because that hurts.

Oh, and to cap it all off? While I was in the hospital in Orlando, I got a photo text from my mom.

Jed had decided to do something acrobatic, and managed to cut the back of his head open on their coffee table.

The cut did not look good when I got home. Sunday we had to shave part of his hair in order to be able to doctor and band aid the wound.

Owie CradleRockingMama.com

Thankfully, it’s healing nicely now.

Still, I kind of want to look at reality and say “Reality? I’m going to sleep now. Don’t wake me up until things are easier and I don’t feel beat up and conflicted, okay?”

And I have a far better appreciation for what my kids go through.

I already had a great  understanding and sympathy for their food issues, knowing that I have been affected by food my whole life, but this spinach reaction?

Wowza!

I was a little scared to trial another food. I can’t imagine what our precious food intolerant/allergic children must feel.

Poor babies.

In fact, I bought green bell peppers to trial next, and it took me 2 days to work up the nerve to trial them!

Good news, though: green bell peppers are safe for me!

That emboldened me to trial sweet peas last Saturday, and they seem safe, too!

I must admit, the speed of these food trials is a little unnerving. Having spent 2-4 weeks trialing every new food for Zac for 3.5 years has me habituated to long trials. This is almost dizzying!

Speaking of Zac, we were able to trial black pepper on him to great success!

We’re holding off on starting a new trial because we want him to eat turkey at Thanksgiving this week.

Oh, and he’s – finally – basically potty trained…as long as he’s naked. As soon as you put anything on his heinie, he stops using the toilet completely. Sigh.

Further making me suspect my family is on Candid Camera, Darrel is sick right now. He cocooned himself all day Sunday and yesterday visited the doctor to learn he has both a viral AND bacterial infection. Fortunately, he can get the “good”, cheap drugs. They said he should feel better in about 3 days.

Just in time to eat Thanksgiving dinner. Not in time to help make any of it. Of course.

Truly, y’all. I HATE Fall. This is just beyond ridiculous. 

Anyway, sorry I’ve been so silent lately, but, as you can tell, it’s been rather INSANE for quite a while.

With Thanksgiving this week, I’m going to be re-sharing some of my best Thanksgiving-themed posts on Facebook and in a compilation post tomorrow.

I sure hope things are going more smoothly at your house than they have been at mine!

Weaning, Post-TED Food Trials & MCAD

Weaning, Post-TED Food Trials & MCAD CradleRockingMama.com

It’s been a rough few weeks. In fact, there’s been so much happening that I can’t fit it all in one post, so this will be a nifty “ongoing storyline”.

To begin, we do have some exciting news! October 30th, I arrived home from work in the early afternoon. As soon as I got home, Zac asked to nurse and I complied.

Little did I know that would be the last time I ever nursed my second son. 

That night, Darrel pointed out that we had agreed Zac needed to wean almost two months before, but here he was, still nursing. Darrel was frustrated.

He’s been worried about my health on such a restricted diet, and since Zac doesn’t seem to need the breastmilk any longer, he’s been growing convinced that the continued nursing is now holding Zac back in terms of emotional development.

I wasn’t so concerned with Zac’s emotional development, but if he really wasn’t getting any breastmilk, then I really  needed to start eating more foods.

Since Zac had stopped having any active “sick” symptoms from our myriad illnesses the last two months, I told Darrel I’d go ahead and tell Zac we were done nursing.

That night, as we got the kids into bed, Zac asked to nurse. I asked him “Zac, baby, do you get any milk when you nurse now?”

He said “No.”

“Sweetie, if you aren’t getting any milk you don’t need to nurse any more. Nursing is so babies can get milk. We aren’t going to nurse any more.”

He looked sad, but just snuggled in and accepted it. He went to sleep with no problems – and no boobie.

The next day he asked to nurse, and I reminded him that we aren’t going to nurse any more. He started to cry, so I asked him, “Baby, do you just miss spending time snuggling with me?”

He nodded yes, so I told him that I love snuggling with him, too, and that any time he wants to snuggle, all he has to do is tell me he wants to snuggle and I will drop what I’m doing to go snuggle on the couch with him. I told him we don’t need boobie to snuggle.

He smiled and ran to the couch, and we snuggled for about ten minutes.

Over the next couple of days he snuggled with me frequently, but never again asked for boobie.

I went to work a few days later, and when I returned home three Saturday’s ago the first thing he asked was for boobie. I reminded him that we don’t nurse any more, and he immediately said “I want to snuggle, Mommy”.

So we snuggled, and that is that.

Zac has weaned. 

1,228 days of nursing. 

1,166 days of nursing on a Total Elimination Diet. 

I thought I would feel sad, and I think if I had done it any earlier I would  have been sad. Instead, I was relieved. As much as I loved loved LOVED nursing my boys, the truth is, I had finally reached the point where I’d had enough.

Weaning made me feel like a weight had been lifted from my shoulders! 

That’s why the very next day, three Sunday’s ago, I excitedly insisted we make a run to our health food co-op so I could pick up the first food I would trial off  my FPIES TED: spinach.

Darrel suggested it because he knows I always loved spinach and I have no leafy greens in my diet.

Even though I already knew spinach is high in histamine and salicylates, I thought trialing spinach sounded good. After all, I’m all grown up. Surely that means I can tolerate a pretty good amount of any triggers, right? Besides, I never used to have any kind of acute reaction symptoms from my food before. Only chronic. I figured it was worth it because spinach is so nutritious.

We came home with the spinach and I quickly made dinner for the family: hamburgers and sweet potato fries for the boys, and salads for me and Darrel.

It was a simple salad, just iceberg lettuce (which I haven’t trialed, but which has none of the things that are potential problems for me so I considered it safe without trialing), spinach leaves, cucumber, hard boiled egg, olive oil, sea salt and pepper.

Delicious Poison CradleRockingMama.com

It. Was. Delicious!!!

I’d forgotten how good salads taste!

We ate dinner at 6:00 p.m.

By 6:30 p.m. I started having a headache.

By 8:00 p.m. I wanted to get unconscious as fast as possible because of the discomfort I felt all over my body, but especially my head.

At 9:00 p.m., laying in bed, I spent 20 minutes crying and whimpering in pain.

Oh, dear God, the pain!

I’m not exaggerating when I say it was almost on par with the pain of childbirth. Not exactly, but dang close.

I could not think.

The overwhelming pain became my entire world.

Eventually the thought oozed through the abyss of yawing pain in my head that hydrotherapy is effective; I should take a bath.

I laid in a warm bath with magnesium chloride for about 20 minutes, which was long enough for the pain to ease back enough that I could think a little.

I hurt everywhere, but the biggest source of pain was my head, so I searched online for natural headache remedies.

If I could just make the headache better, I hoped I could tolerate the rest of the pain

Eventually I got out of the bath and oozed to the kitchen where I made some lavender and peppermint essential oil blend in tallow to rub on my temples.

Then I got an ice bag put together. (And yes, I whimpered like a wounded animal through all of these lovely activites.)

I smeared the EO blend on my temples and sat with the ice bag on my head. That offered some relief from the pain, but only if I sat perfectly still. Even a slight movement made the pain come roaring through like a freight train.

I took the opportunity of perfect stillness to text a “food trial update” to my friend (a fellow FPIES mom).

Immediately after commiserating, she asked “do you have any Benadryl?”

I said I did, and she told me to take one. “If you have MCAD (Mast Cell Activation Disorder) it will help.”

A quick look through my kitchen proved I could not find the bottle of compounded dipenhydramine I got for myself the last time we had the boys bottle refilled. Moving=pain, so I decided to take 4 of the boys dipenhydramine, since 4 of theirs equals 1 dose for adults. (Remember, each compounded pill costs 50 cents!).

I asked my friend how long it would take to make a difference, and she said as fast as a food reaction is. Since my food reaction took about half an hour to kick in, I noted the time on the clock and sat perfectly still with an ice bag on my head and waited for 30 minutes to pass.

I didn’t have to wait that long.

Within 10 minutes, I felt 80% better. 

By 15 minutes, I was 90% better. 

That was as good as it got; apparently, the indescribable physical pain has a “hangover effect”. Though my pain was 100% gone, I spent the next 3 days feeling as sore and achy as if I had worked out far too hard or survived a car accident (both of which I have done and can say the soreness was comparable to).

I have NEVER felt anything like that reaction in my life. It was absolute agony. I’ve had surgeries  that didn’t make me feel as awful as that.

I’m not joking when I say the only time in my life that I felt more physical pain than that Sunday night was during childbirth.

Consequently, Monday morning found me calling to make an appointment with a MCAD specialist for myself and the boys.

It’s quite clear I have MCAD, now. No more pretending I don’t or hoping it isn’t severe. I have it, and it’s not good. I need help. 

And MCAD would explain a lot of what goes on with the boys, too. They need help, too.

Unfortunately, the pediatric MCAD specialist is no longer taking new patients, so I was unsuccessful in getting an appointment for the boys. I’ll keep searching for someone to help them.

Oh, and my appointment? Not until September of 2016.

Thank God I have my friend (fellow FPIES mom who also deals with MCAD) to help guide me through food trials this year!


That’s more than enough for today. I’ll finish the rest tomorrow. 

So what’s new with you? Have you ever had a food reaction like this? How did you deal? Did it make you scared to try new foods, too?