Injured and Stressed

A week and a half ago I got hurt at work. Again. Only this time it’s my right hand. You know, my dominant one. The one that allows me to do everything I do.

I missed 5 days of work already this month and have to go to the doctor again Monday to see if I can go back this week. Spoiler alert: I can’t.

After over a week of wearing an immobilizing hand/wrist brace, icing my hand every two hours, taking prescription strength (compounded) ibuprofen, and doing almost nothing with my hand, I felt a lot better. No pain! Yay!

The kids Classical Conversations community dress-up day (in lieu of Halloween) is this Tuesday, and they’re supposed to go as their favorite literary or historical figure. Zac wants to be Leonardo da Vinci, and Jed wants to be Francisco Vasquez de Coronado. (We haven’t burst his bubble yet with the truth about Coronado, for the completely lame reason that it took him FOREVER to pick a costume he wanted and we ran out of time to make a different costume. We’ll fill him in on the unsavory truth of Coronado after  his dress-up day.)

An essential part of any costume for Coronado is a conquistador helmet, which, a mere 5 days away from showtime wasn’t something I could find and have delivered in time. Luckily, I found instructions online for how to make one out of papier mache.

My hand was feeling so awesome, I thought “Hey, the doctors said not to do anything strenuous, and not to lift more than 10 pounds, but this is tiny bits of newspaper and glue! I can handle that!” So I took off the wrist brace (glue, you know) and went to town. 45 minutes later I had a pretty decent helmet started, and my wrist hurt like hell. Actually, it hurt worse. A lot worse. But I’m trying to cut down on the cussing I do. Ahem.

Ever since then, the pain is back. Not as bad as it was the first day, but about as bad as it was on my second day of wearing the wrist brace.

From doing papier mache.

Does anyone with half a brain really think I can handle manhandling a bar cart or operating an emergency exit or performing CPR on a passenger right now? Anyone? No, I didn’t think so.

So I’m going to continue to be out of work. Hopefully this week the doctor will actually send me to a specialist to get me started on something akin to therapy or treatment instead of  just “go home, pop these pills and rest and you’ll be fine”, which hasn’t worked at all.

I say hopefully, when really I want to cry at the thought. Does my life really have time to do MORE? I already have to go in to town three days a week for hours of therapy for the boys. Each of those days is a frantic race to get our homeschooling done, get to therapy on time, race to complete errands before the boys are done, race home to try and get dinner on the table on time so bedtime isn’t shot (making the next day miserable for everyone because the boys are tired)…and I fail at all of that more often than not already. Do I seriously want to add MORE therapy – for myself  – to the mix?

No. Let me rephrase that. NO. NONONONONONONONO.

But I need it. I don’t think my hand is going to get better without it. And we can’t survive if I’m not functioning. This week has been miserable.

I can’t cook. I can’t clean. I can’t help the boys with small tasks. I can’t DO anything! And although the boys promised to help me, they didn’t. Not really. Not without reminding. And nagging. And begging. And pleading. And eventually crying. And worse.

And Darrel is coming home from a really rotten work situation every day, having to cook dinner, clean the kitchen, and watch the boys go to bed late every single night. He’s exhausted and stressed.

And with all the extra time it takes me to accomplish everything right now, and how much pain I’m in (remember, it’s not just the hand/wrist; it’s also the rash reaction I’ve had going on from MCAD for FOUR MONTHS) this week, when the boys argued with me about doing schoolwork (because what self-respecting contrary child doesn’t argue daily about doing schoolwork??) I just didn’t have the energy to hold my ground and we are behind. Way behind.

As in, Sunday I made them sit and do THREE DAYS worth of school in one sitting, and we still have TWO days worth of school to do today. You know, in between doctors appointments that are an hour drive apart.

I’m typing this mostly with my left hand. I say mostly because out of habit I reach up and type normally at times and immediately go “OW” and stop again…until the next time I forget and do it again.

So, who knows how long I’ll be gone, both from work and from here. I just can’t do it.

This sucks.

Allergic to Living: Mast Cell Activation Disorder

What is Mast Cell Activation Disorder, or MCAD? What does it look like? How do you find out if you have it? How do you treat it?

I’ve mentioned MCAD (Mast Cell Activation Disorder, aka MCAS – or Mast Cell Activation Syndrome) before, and many of my readers are, unfortunately, already all too familiar with this condition. Y’all can run along, now, if you want, because I’d hate to bore you; this post is for the many readers who have written to ask me “What is this MCAD thing you keep mentioning?”

Here’s my unique way of explaining Mast Cell to people. I hope you’ll appreciate that I will attempt to be technically accurate and also funny. Which is hard. Really.

Before I start, I have to say that I am not a doctor and I do not play one on TV. This is my own interpretation of my personal medical condition, and though I always strive for accuracy and truth, I may well have some parts wrong or just not very thorough. Consult your doctor, and don’t take my word for it!

Everyone has Mast Cells. In all my reading I remember seeing the theory that mast cells are necessary for life, as they had yet to discover anyone who didn’t have them. So, cool! Right?

Right. Except for two groups of people: those who have too many  mast cells, and those who have the right number of mast cells…only theirs misbehave.

Too many mast cells is called Mastocytosis, and misbehaving mast cells is called MCAD (or MCAS).

My mast cells are in dire need of a spanking or a time out, because those little…things…misbehave all the time for me!

Well, if mine misbehave, what are mast cells supposed to do?

Simply put, mast cells are a part of the immune system that serve as a warning system and “first responder”. When normal people get a bee sting or some other form of injury, it is their mast cells that turn on their body’s “wee-oo, wee-oo” siren telling all the other systems that there is a problem, and mast cells tend to be proactive in flooding the body with histamine and other chemical goodies to help stabilize things.

Mast cells kind of rock at keeping us, you know, alive.

But when your mast cells misbehave, they wreak havoc.

Imagine if you were just walking down the street and out of nowhere, an ambulance pulls up, the paramedics jump out and grab you, strap you onto a gurney, start an IV, inject you with glucose, secure your neck in a stabilizing collar and shove an oxygen mask on your face.

Would you be shocked? Surprised?

Yeah, I bet you would.

Especially when it is revealed that the paramedics just got confused; you looked like the person they’d been called out to treat. Only, you weren’t that person.

That’s kind of what happens to people with MCAD. Our mast cells just get confused and react to weird stuff at weird times; notably things that are actually not  a problem for our bodies.

So, see, my “triggers” are actually just fine for my body. But my mast cells are all confused and act like they are a problem, which makes  them a “trigger” that is dangerous for my body.

Got it?

So what does MCAD look like?

Not to steal from the autism world, but, if you’ve met one person with MCAD, you’ve met one person with MCAD. The list of symptoms is robustly long, and no two people are going to react exactly the same. My very good friend (the one who helped guide me to a specialist) and I often joke about how our individual diets would kill the other one, and we both have MCAD, and our children both have FPIES. Go figure.

Even better, as I’ve mentioned, some MCAD people are “shockers” and others are “leakers”. Shockers tend to react quickly and life-threateningly to triggers (think anaphylaxis), whereas leakers (like me, so far) just degranulate slowly. As my doctor put it, “MCAD doesn’t affect life expectancy, it just makes your life very, very miserable.”

What is degranulation?

Well, it is a fancy word for “explode”. Here’s a nifty video (and pretty excellent article) of mast cells degranulating. Yep. My mast cells actually explode in my body and release whatever chemical they think my body needs to regulate healing.

Unfortunately, my body wasn’t sick, didn’t need healing, so the “cure” becomes the sickness.

I’ll give you a couple of real life examples to make it clearer. Remember my spinach reaction? Right. Worst pain in my life second only to childbirth. I ate spinach, which is high in histamine and salicylates, and my mast cells went all “Red alert! Red alert! We have an invader! Call out the troops! We must go to war!” giving me a headache that shot straight from the top of my head all the way to my toes, along with body aches, muscle pain, and an overwhelming desire to die…or at least go into a coma until the PAIN WENT AWAY.

Let’s not forget the chronic sinus infections I’ve had my whole adult life. The year I was married to my ex-husband, my sinus infections were so relentless the ENT finally gave up and said the only thing left she could think of was exploratory surgery  to discover the cause of my unending sinus infections. (Sinus infections which almost cost me my job, seeing as how sinus infection for a Flight Attendant equals grounded.) The day my ex walked out, my sinus infections stopped.

For six months, at least.

Clearly, stress is a major trigger for me. Along with heat, cold, anxiety, hormones, many foods, perfumes, chemicals, and who knows what else. (Full body hives? Rashes that stump the pathologist? Being misdiagnosed as bipolar? Welcome to my world.)

Symptoms I’ve had so far include extremely debilitating headaches, body pains, hives, menstrual cycles from hell, depression, anxiety, IgE allergies, diarrhea, sinus infections, upper respiratory infections, fainting when I stand up (POTS), unshakeable weight gain, eye issues (floaters, itching, etc.), low blood pressure, unexplained irritation and anger, lethargy, exhaustion, insomnia, and probably a few other things I am forgetting. Oh, yeah. Brain fog.

In other words, if you’ve got a laundry list of weird stuff that happens to you, even minor things that happen so often you’ve come to think of them as normal and hardly notice them any more, you might have MCAD. 

If you suspect you do, I’d recommend reading Dr. Lawrence Afrin’s book, “Never Bet Against Occam“. When I read it, I lost count of the number of times I thought to myself “Wait, that’s not normal? I’ve had that my whole life!”

How can I find out if I have MCAD?

It’s tricky. Really tricky. My doctor is one of the worlds foremost experts on MCAD and even he said the tests often don’t show a postitive “your mast cells are whacked” response. He actually clarified that he would be willing to run the tests THREE TIMES before pursuing other testing methods, like bone marrow biopsy.

The tests they’ll run will look for things like N-methyl histamine, prostaglandin D2 or 11-beta- prostaglandin F2 alpha, leukotriene E4 and others, but if you’re like me, that’s all Greek.

What I can say is that I went down to the lab after my appointment, and the tech there needed a full half an hour to prep for my immediate testing. She drew about a thousand vials of blood (seriously, I think it was actually 12 vials) which she immediately wrapped in multiple ice packs secured with rubber bands and raced off to a fridge.

Then I had to go pee in a cup wrapped up in ice packs. That was easy. Right.

Then I had to go back to my friends house and prepare for the 24 hour urine test. That meant filling an ice chest with slushy ice, and submerging one specimen container into the ice completely to the rim. Then, for 24 hours, every time I peed I did so into a container that I immediately shoved as far down into the ice as it would go. Once it cooled, I dumped it into the totally submerged container and shoved it back into the ice to keep it cool for the next time I had to pee.

Then I had to haul the ice chest to the lab, put the specimen container with 24 hours worth of pee into a large ziploc bag filled with ice, race it inside, inform them what I was dropping off and hand it over to a tech who raced it immediately to the lab fridge.

Just think; I may get to fly back to Minnesota twice more to go through that. Fun, fun.

Even better? So far most of my test results have come back normal. Except for a couple that were WAY off the charts. As yet, I still don’t know if I have officially gotten my MCAD diagnosis via testing.

My doctor assured me, after meeting with me, that it doesn’t matter what the testing says. He says I’m “classic MCAD” simply based on my clinical evaluation. So he plans to push through as much testing as possible to verify what he already knows is true.

Why go through all that? What can be done for MCAD?

It sure seems like a lot of unpleasantness to go through for a diagnosis, and believe me, I wouldn’t bother if there wasn’t the chance for a solution!

Unlike FPIES, with MCAD there are some things that can help. And for something as complicated as this condition is, you’ll never believe the first drugs they want you to try.


Claritin. Zyrtec. Tagamet.

I know, right?

Well, those aren’t THE answer. Those drugs don’t always work, and some patients need something with a little more kick. But the doctors start  with those simple, every day, OTC drugs.

Additionally, strict trigger avoidance is always prescribed.

Of course, I’d rather not be drug dependent my whole life, and my friend has proven that, in some cases, you can be healthy and non-reactive without drugs. She’s entered the world of GAPS, properly fermenting foods (so as not to raise the histamine levels), and strict trigger avoidance; a life I wish to emulate.

However, thanks to this summers reaction from hell that won’t go away, I’m so “reactive” that the current plan is to try and get my system calmed down via drugs, and then work towards weaning off the drugs and on to a more holistic method of regulation.

While keeping a fully stocked medical bag. Just in case.

I hope that helped explain what MCAD is to my uninitiated readers. If you’d like to read more about it, click on any of the many links I included in the post, or click on any of the links down below:

Of course, you can always just google “mast cell activation disorder”. That ought to keep you busy for a while!

Fellow mast cell people, did I do the subject justice? What would you share?

Global FPIES Day 2016

global-fpies-day-2016 cradlerockingmama.comRecently we have decided that, other than oats, it appears Zac may have – finally – outgrown FPIES.

Thank you, God!

We are all thrilled with this. Of course, we have discovered other issues that take the place of FPIES, but are eternally grateful that only oats appear to make Zac vomit uncontrollably and experience other unpleasant symptoms now.

Outgrowing FPIES is a blessing; it’s the “get out of jail free” card every FPIES family dreams of. Because, make no mistake: living with FPIES is very like being imprisoned. No aspect of your family life is unaffected. Knowing your child could become so very sick from even the tiniest trace of a food is terrifying, and to avoid that families change everything they do.

They change their diet.

They change their personal care products.

They change their cleaning products.

They change their homes.

They get rid of their pets.

They sometimes change their jobs.

They lose friends.

They lose family members.

They lose themselves.

They all hope and pray for the strength to keep their children safe, for their finances to survive outrageous monthly grocery bills, for their marriages to survive the stress and upheaval, for good medical care, but most of all, they hope and pray for the day when their child outgrows FPIES and can begin living an unrestricted childhood.

They pray for the day their child can eat a slice of cake at a friends Birthday Party.

They also pray that, while still waiting for their “get out of jail free” card, they have understanding “inmates” to share that time with. Friends, family, doctors and nurses who will get it and be helpful and kind. All too often that doesn’t happen, and for that reason FPIES Global Awareness Day was created.

We are basically out of the FPIES world, now (even as we enter several new special needs worlds), but I look back in amazement at what we went through the first three years of Zac’s life and clearly remember what current FPIES parents are going through. I know. I get it. I’m aware.

So I’m asking for help in spreading the story of FPIES, no longer for my own son, but for those families still surviving that life. Help them find understanding “inmates” in their journey by sharing what this disease is, and how it affects children and families.

First, go here to Find Your 14 Tools to Get Involved on Global FPIES Day and see what you can do to spread the word.

Then, read and share some links on social media.

Here are some links you are more than welcome to share today…and always!

Honoring Global FPIES Day (this one has a ton of links to share, too!)

Global FPIES Day

I Still Have FPIES Eyes

FPIES Awareness (Still) Matters

Blog: Bullfrogs and Butterflies

The FPIES Foundation: Inspiring Family Stories

What Every New FPIES Parent Needs to Know


10 Things Other Parents Needs to Know About FPIES

Blog: FPIES & MudPies

Blog: Our Mack Attack

Blog: Our Lives and FPIES

Blog: Trials and Triumphs of Nicole

Blog: My Little Pie with FPIES


Our Superhero: Cohen’s Story (Super Cohen’s Crusade for FPIES)

Zac Walking in a Play Area

Jack’s Soy Reaction

Zac Having an FPIES Reaction

FPIES: Now I Know

Corn & Sugar-Free Homemade Ketchup

corn-sugar-free-homemade-ketchup-cradlerockingmama.comA while back I posted my homemade ketchup recipe. It’s delicious, it’s perfect, it’s wonderful…and we can no longer use it!

When I first started making it, I only made it for Jed. I knew that vinegar was made from corn, but that was okay. This wasn’t for Zac. Later I learned that dextrose is also made out of corn, but again, this wasn’t for Zac, and Jed didn’t have a problem with corn.


We learned earlier this year that Jed does, in fact, have a problem with corn. Corn is no longer allowed in our home in any shape or form. Furthermore, I have decided sugar has no place in our home except on very rare, very special occasions, and in incredibly small doses.

Jed was devastated. No ketchup? Oh, the agony! The betrayal! Whatever shall a ketchup loving kiddo do??

Nag Mom, of course! Nag her until her ears want to bleed, and she finally gets around to tweaking the recipe to be safe.

I’ve made some interesting substitutions, but I assure you, this is still an excellent ketchup. It no longer tastes exactly like store-bought ketchup, but in many ways, that’s a plus.

Now it tastes like gourmet ketchup.

(We’re gettin’ fancy up in here, y’all.)

Oh, one little thing. The substitution for dextrose I made requires another recipe of mine: homemade stevia extract. If you haven’t already, go make some. I’ll wait.




Just kidding! That recipe is no longer an option for many of you due to the fact that the growing season is coming to a close and stevia plants aren’t really around any more. (Although, if you have some stevia plants, not only can you still make this, but you can actually dig that plant up, transplant it to a container, and keep it alive through the winter in your house! We did that last year, and it was awesome!)

If you have some homemade stevia extract laying around, you’re golden. If you don’t, you can still make this; you’ll just need to choose a substitution that works for you. (And next spring? Plant some stevia to make your own extract! It’s divine!)

  • Option #1 – powdered stevia; choose which one you like and experiment to see how much you want to add.
  • Option #2 – sugar, but in INCREDIBLY reduced amounts!

The other change I made was to the vinegar. I switched that out for lemon juice. 

As far as lemon juice goes, fresh is best! Even at my health food co-op, where the goal is organic/real food, there is citric acid in the bottled lemon juice. Citric acid=CORN, so go buy a ton of lemons, squeeze those puppies, and freeze the extra in ice cube trays. Then you can have ketchup year round.

Unfortunately, this version is no longer the same price as store-bought ketchup. The lemons make it a bit pricier. Boo.

Fortunately, Zac can now have this recipe! (He won’t eat it, because he apparently doesn’t like ketchup, but he could if he wanted to! Sigh…)

I’ve recently gotten into lacto-fermenting, and I understand you can make ketchup that way, so I imagine that one day I’ll be presenting a third ketchup recipe. Well, I suppose one can never have too many methods of preparing something as awesome as ketchup, right?

You’ll notice the quantities of lemon juice and water are much higher than in the previous recipe. Without all that sugar adding volume, it needed a lot more liquid to make it work. Don’t worry; it isn’t a misprint!

For best results, let the flavors marry and meld in the fridge for a day before using. It’s good straightaway, but the lemon is a lot stronger at first. It mellows and becomes almost undetectable after a night hanging out on the door of your fridge.

So here it is: how to make a homemade ketchup that is completely corn free and sugar free!

Corn & Sugar-Free Homemade Ketchup
Prep time
Cook time
Total time
This delicious ketchup recipe is completely free of corn and sugar. It's easy, it's healthier than other ketchup, and it is yummy! Enjoy!
Recipe type: sauce, condiment, corn-free, sugar-free
Serves: 1.5 c
  • one 6 ounce can of tomato paste
  • ½ c. fresh squeezed lemon juice (3-4 lemons)
  • ½ c filtered or spring water
  • 1 tsp. salt
  • ⅛ tsp. ground celery
  • pinch of ground cloves
  • 2-3 tsp. homemade stevia extract OR 2-3 scoops of powdered stevia OR 2-3 T. sugar
  1. Roll your lemons on the counter, cut in half, and squeeze ½ c. of juice.
  2. Put tomato paste, lemon juice, water, salt, ground celery, and cloves into a saucepan and whisk together until smooth. (If using sugar as a sweetener, add it now as well.)
  3. Heat on medium heat until just boiling; immediately reduce heat and simmer for 20 more minutes, stirring frequently.
  4. Remove from heat and let cool on the counter for 10 minutes.
  5. Add the stevia extract and whisk together until well blended.
  6. Let cool completely before adding to a bottle or jar.
  7. Store in a covered container in the fridge.
  8. For best results, let the flavors meld for a day in the fridge before eating.
  9. Enjoy your healthier, delicious ketchup!

 Happy Dipping!

What’s your favorite unusual ketchup flavor?

Make A “Jeopardy” Style Quiz Board

Somewhere around our third week of Classical Conversations, I started to become overwhelmed by the sheer volume of data my kiddos were learning.

We needed to review, but I couldn’t imagine how we could do so in a fun way that didn’t make the boys hate learning.

After a few days of mulling it over, I realized the “data bites” we were feeding the kids fit perfectly with the style of Jeopardy. To try it out, I grabbed an old piece of foam poster board I had laying around, wrote some questions on index cards, folded them in half, wrote numbers on the outside, taped them to the board, and tried it out on the kids.


The boys were extremely excited to compete in a quiz game; not only was there a prize involved (I generously offered one red chip for every five questions answered correctly), but it was brotherly competition at its finest!

They loved it so much, I knew we had to keep doing this regularly. Only…the thought of writing out those questions every time we play  made my head want to explode. Surely there had to be an easier way!

So I came up with this:

How to Make A “Jeopardy”-style Board Game


  • One 36×48 inch Tri-fold display board
  • 2 packages of Terrific Pockets
  • 3×5 Index cards
  • Scotch tape
  • Adhesive to affix pockets to display board
  • Memory Master Flashcards from Classical Conversations (omit if not using CC)

I bought everything at Office Depot, which offers a nice discount to Classical Conversations families.

I chose plain white pockets so that in the future I can write question values on the front, but they have colored and patterned pockets if you’d like.

For affixing the pockets to the display board, I used some waxy poster hanging stuff I already had at my house. You can use anything you like that would work. 3M has lots of sticky adhesive things, of course, but regular old tape would work fine. (I didn’t choose that at first because I wanted to be able to adjust the number and location of envelopes until I was satisfied before permanently attaching them.)

When I started to put it all together, I realized the cards fell into the pockets so far I would have to dig them out every time. Eventually, I knew, that would rip the pocket. Plus, it would make it a pain in the tuchas to use.

So I held a card up next to a pocket and folded the bottom up enough that the card would fit while still sitting high enough to grab easily. I ended up folding about 1.25 inches or so up from the bottom.

Using that pocket as a guide, I folded all the other pockets likewise.

Then I used scotch tape to hold the fold down firmly. This may be an unnecessary step, but my perfectionism wouldn’t allow it to be all loose and floppy. Feel free to skip it if you don’t have my issues!


  1. Lay 3×5 inch cards across the top of the board (2 cards on each small side, 4 across the center) to mark your category headings; label them first if you already know which category headings you wish to use
  2. Arrange your pockets (folded or not) below the index cards. Folded, I was able to fit 7 pockets per
  3. Secure the pockets to the board using whatever you choose (temporary if you’d like to adjust, or permanent if you’re happy with their placement)
  4. Secure the index card/category headings to the board
  5. Stuff the pockets with your Memory Master Flashcards
  6. Have a blast reviewing your schoolwork!

Now, here’s where I have to be a little like Lucy: I’ve got some “‘splainin'” to do!

My boys are only 4 and 6 years old. They’re still learning how to read larger numbers, and they’re pretty young to follow complicated game rules.

To simplify the game, I took index cards folded in half, wrote random double-digit numbers on them, and slid them in the top of the pockets in front of the Memory Master Flashcards.

The reason for this is that I do NOT want to have to fold 56 pockets again in a few years, when they’re ready for me to put real numbers on the pockets a la “I’ll take Geography for 50, Mom”.

Right now, they also don’t know how to read, so they wouldn’t be able to say which category they want anyway!

Using this method for now means that I can eventually add index cards with categories to the top of the board and write real numbers on the pockets, but for now, the boys can just say which number pocket they want. It helps reinforce reading numbers and makes it much more doable for now.

Eventually I can change out some or all of the numbers for sight words, or some other little thing we are trying to teach.

How to Play with Younger Students

  1. One child calls out the number they want
  2. Take that card out and ask the question (take out the folded number, too, or they’ll keep asking for numbers they’ve already answered!)
  3. After the question is read, start a timer (we use a 1 minute hourglass)
  4. The child has one minute to answer correctly; if they cannot, the other child has a one minute chance to answer the question
  5. Whoever answered correctly gets that card added to their pile
  6. At the end of the game, whoever has the most correct answers wins

Very simple for their age. We can “complicate it up” to be more like real Jeopardy (shorter answer times, keeping score, double Jeopardy round, etc.) when they get older.

In the meantime, this “Jeopardy” style quiz board works beautifully and will be easily converted to be age appropriate in a few years.

It took about 30 minutes to make this board. The total cost was $19.47 plus tax at Office Depot, plus the cost of whatever you use to affix the pockets to the board, and the Memory Master Flashcards. I did use index cards, but had those laying around so did not factor their cost in the total. I did not list the Classical Conversations discounted prices at Office Depot here. Consequently, it might be less expensive for you to make.

Keep in mind that while this is not cheap, it is also not horribly expensive. Cared for properly, this board should last several years, which makes the cost more palatable.

For homeschooling families who do not use Classical Conversations, you can still use this board!

The only difference is that you’ll have to create your own question cards to put into the pockets. On the plus side, using an index card for your questions might mean you can avoid folding all those pockets! (Though you’ll fit fewer questions on your board.)

Hopefully this helps you make a “Jeopardy” style quiz board game for your own house! If your kids love games and competing, I think this is one of the best ways to review their CC material!

(Bonus: the questions that neither child answers correctly go into “mama’s pile”, letting me know exactly what we need to focus on this week!)

Happy quizzing!

Catching Up

Since its been so long since I’ve written, a little “catch up” post seems in order.

Jed and Zac have both been in Occupational Therapy for their Sensory Processing Disorders for most of the year. The benefits have been amazing! My children are blooming, and I couldn’t be more thrilled.

We decided to begin using Classical Conversations for our homeschooling curriculum. It’s only been 6 weeks, but I’m already a total believer in this program and we plan to continue it through graduation. The boys are proving to be intellectual giants (ahem) and absolutely adore school!

Last week Jed finally began reading. He’s BEEN reading for ages, but it was almost as if he didn’t understand what he was doing when he was sounding out words. Last week, it finally clicked in his mind and he got  it. He proceeded to read two stories from a primer book and looked more excited than he does on Christmas morning.

It was better than Christmas morning for me, too.

Turns out, Jed also has quite the artistic bent. He’s amazing at creating artwork! I never saw this side of him before the summer, but now, he can happily sit at the table making beautiful art for hours. I’m running out of wall space for display!

Oh, he’s still young, so his technique is still immature, but his artwork tells stories, he experiments with different techniques and mediums, he catches on to things in our art class quickly and without explanation sometimes, and he gets better every day. It’s amazing!

True to form, it is September, and the boys have come down with stomach bugs. Again (last year it happened in October, but that was a fluke). So far Darrel and I haven’t caught the bug (yet), but we’re both already sick with other things, so, the whole family is still down for the count. I hate September.

Jed lost his first teeth this summer. Other than the blood, it was fairly nonchalant. He was very excited about the Tooth Fairy!

We had another great birthday party for the boys in June, this time with a few new friends they’ve made this year. It’s been wonderful watching them make friends and learn how to be kind and thoughtful over the long term with kids their own age!

Beyond stomach bugs, my health has not been doing well this year. Without the nursing hormones in my body, I’m reacting almost non-stop.

Reacting? Why, yes! Turns out I likely have (95% sure, awaiting further tests), as suspected, Mast Cell Activation Disorder. I’ll write a lot more about that in the future, but suffice it to say, my immune system is out of whack and I react to typical things in ways normal people don’t.

It turns out I’m a “leaker”; an MCAD word meaning someone who just slowly reacts all the time (as opposed to a “shocker”, which is someone whose reactions are instantaneous and often anaphylaxis). I’ve been “leaking” my whole life, apparently, except when I was pregnant and nursing.

It appears I’m one of the rare MCAD women whose health improves  with pregnancy. Far more common is women who suffer greatly during pregnancy.

Think I’m too old to be a surrogate? (Joke. Sort of.)

Without the pregnancy and nursing hormones I’ve been slowly reverting to the way I was before the TED for Zac, and it stinks.

No. It doesn’t stink. It’s miserable. Terrifying. Horrifying. Depressing. And stressful. Which is really bad, because it turns out that stress is one of my major reaction triggers. 

Stress isn’t good for anyone, of course, but stress literally makes me physically sick almost immediately.

Yay…because our lives of food and other issues is just so easy and carefree, donchaknow??

I’m dealing with that, and growing to accept the fact that the glorious health I enjoyed during the TED for Zac may have been the only 3.5 years of my life where I feel like the majority of people feel on a daily basis, and that feeling lethargic, sick, emotional, and being fat is simply the way my life will be. Forever. Til I die.

I kind of want to cry.

I guess I shouldn’t give up hope, yet. There are some medications that can help with this condition. While I’m happy for that knowledge, I’d really rather not be dependent on daily medication before I’m even 40. That thought is kind of a bummer.

Well, I’ll adjust. New realities are normal for us by this point.

Darrel and I decided our lives were too stressful and we needed a break earlier in the summer. We planned a “staycation” in June for just the two of us. The boys went to my parents house for a week while we stayed home alone.

It didn’t work.

The air conditioner went out. Some things came up that needed to be dealt with. We ended our staycation just as stressed as we started, if not more so.

So we decided to ease up on food vigilance for a while. Maybe not having to be so paranoid all the time would make things less stressful? As long as the food was corn-free, known-trigger-free, and organic, we pretty much let both boys eat whatever they wanted.

So did I. Forget the TED!

For the boys, it went beautifully! Zac is chowing down on rice now with no ill effects. That’s opened up lots of pre-packaged snacks for us (crackers, rice cakes), which is wonderful.

Both boys adore pumpkin seeds and pistachios, which, again, opens up snack options for us.

We aren’t brave enough to trial oats on Zac again, nor cow dairy on Jed, but otherwise their diets have expanded considerably this summer and they’ve shown no ill effects. It’s glorious!

One negative came this spring, when we figured out that Jed actually reacts to corn. I don’t know why it took so long to see; I suppose his reactions were being hidden by other things.

But we finally determined that maple syrup and cocoa are no good for him, and straight sugar is fine but any kind of processing on the sugar makes it bad, and once we got that straightened out his corn reactions became very, very clear.

That made feeding Jed more restrictive, but with the lessening of restrictions on Zac this year we have an overall net positive on food consumption in this house, and that makes life a lot easier. (Though, really, eating a diet that must strictly avoid corn, wheat, egg, cow milk, and is limited in fructose, salicylates and histamine isn’t easy by any stretch of the imagination.)

FPIES isn’t gone, but it does appear that Zac’s only trigger at this point is oats. I’m happy to hold off on those for another year before we retrial.

It’s an unbelievable relief to no longer worry if my son is going to end up in the hospital if he eats a new food!

I, on the other hand, was triggered mightily by something (or somethings) I ate this summer, during this “de-stress experiment”, and I’m still trying to get back to baseline. Of course, I could have been set off by the stress I’ve been under, but still. Food always fixes things in my family, so I went back on the 6 item TED (beef, potatoes, olive oil, sea salt, black pepper and stevia) on August 1 in an effort to get back to normal. 7 weeks later and my body is still as bad as it was this summer. I must admit to feeling somewhat betrayed that food hasn’t fixed me; eating properly has fixed almost everything in my family over the last 4 years, so this is quite a disappointment.

I’m tired of feeling awful all the time.

This year found us entering the world of farming. We now have rabbits and dairy goats. The rabbits are for an affordable meat source, and the dairy goats are because we spend SO much money on goat milk every year and so much time procuring milk half the year, it seemed like a good experiment to see if we could handle milking our own goats. We are still waiting on our doe to give birth, after which it will be a couple months before we can start taking any milk from her, but our fingers are crossed that this works!

Oh, and we have barn cats. LOTS of barn cats. (Anyone need a kitten? I have lots!) It’s kind of out of control. Bob Barker was right: spay or neuter your pet!! (Though the boys LOVE having so many kitties to play with.)

That pretty much hits the highlights of the year. What’s been going on in your world?

Why I Stopped Writing (For A While)

It’s been a long time since I’ve written here.

A LONG time.

Before I start posting more frequently again, I feel I owe an explanation to my regular readers (and those of you who are still around after this long hiatus, thank you!). This will also serve as a sort of mission statement about the change in tone this blog is about to make.

When I first started writing this blog, I kept my family anonymous. Jed was “Mr. Charm”, Zac was “Mr. Happy”, Darrel was “The Geek”, and I was simply “Mama”. After a while, I got frustrated with that. Sure, I was sharing about my family and our health issues, but it wasn’t anything I wouldn’t have told a complete stranger in person, so why all the subterfuge?

I announced our real identities and never looked back.

Then this January came, and with it, the shocking diagnosis of Asperger’s. (For my new readers, especially anyone in the Autism Community, read this for an explanation of why I use the now-medically-incorrect term ‘Aspergers’ before you send me any comments, please.)

I had a lot of research and soul-searching to do, which contributed to my writing hiatus.

However, I went through similar researching after Zac’s FPIES diagnosis, and instead of cocooning myself, I started this blog. So what was different this time?

For starters, when we first heard of FPIES, there was almost nothing on the internet about it. I felt compelled to write in order to help other families; even if I was new to this and learning as I went, sharing what I learned as I learned it would be extremely helpful due to the lack of online aids at the time. It felt right to write.

Secondly, over the last few years I’ve grown accustomed to the online Food Allergy World. It is an overwhelmingly kind and encouraging place! The families that live with food allergies and intolerances are supportive of any effort to keep oneself and ones children safe. The attitude is sort of “I’ll try anything once, I’ll share any research I’ve learned, I’ll encourage anyone in their efforts – even if I think they’re crazy!” In my first couple of months delving in to autism reading, I was unpleasantly surprised to realize it doesn’t always work that way in the Autism World.

It was shocking to read some of the incredibly harsh and cruel words in so many places. I couldn’t believe the attitudes! It was the OPPOSITE of the Food Allergy World in so many ways, and, frankly, as overwhelmed in my thinking as I was, I knew I would write things that would lead nastiness into my world.

I’ve been down that road before, and I learned how to handle it. When I truly believe in what I’m saying, I’m no longer afraid to speak out and face whatever backlash may come. In this case, however, I didn’t know what I was thinking, so anything I wrote might not actually be what I came to truly believe. I wasn’t willing to endure nastiness over something I wasn’t 100% sure of myself.

As time went on in silence, however, I started to realize something. Our anonymity on this blog at first eventually didn’t make sense, because I wasn’t sharing anything that was embarrassing or potentially harmful to myself or my children. Food allergies aren’t something to be hidden away, after all; safety requires you share that information with your friends and acquaintances.

Autism is different.

Oh, autism isn’t something to be ashamed of, certainly. It’s how we’re made, after all, and God doesn’t make junk. We are perfect in His plan.

But there is ignorance out there. There is cruelty out there.

I realized that by sharing openly about Jed’s struggles and behavior, I was potentially inviting judgement and cruelty to seek him out. (That’s almost certainly why, in the majority of blogs about raising autistic kiddos I have found, the parents use a pseudonym for their child instead of their real name.)

Right now it might not be a problem, but in fifteen years? IF this blog is still operating, a simple Google search by a potential love interest or employer would yield multitudes of potentially misunderstood and therefore character damaging stories about my amazing son.

There is absolutely no way I will do that to him. He deserves the respect of privacy and the right to share about himself only at HIS choosing. 

Unfortunately, without sharing openly about all things, I found myself facing a bit of writer’s block. Combine that with some complicated health issues of my own that I’ve dealt with this year, and I left Cradle Rocking Mama dormant.

But I still love writing. And I still want to help people.

So I’ll be changing it up a bit here from now on. Here is what I will not share any longer in this forum:

  • Specific issues my kids deal with related to Asperger’s, ADHD, or SPD
  • Photos of my kids
  • Any stories that even may have potential to reflect badly on the boys, no matter how cute or potentially helpful they might be to someone else

What I will continue to share:

  • Food issues
  • Recipes
  • Homeschooling in general, and…
  • Classical Conversations specifically
  • My journey into MCAD (Mast Cell Activation Disorder)
  • Animal husbandry
  • My personal thoughts on whatever topics seem relevant, helpful, or just relatable (such as being a working mom who homeschools and manages food allergies in her kids and health issues for herself)

Thanks for sticking around, and I hope you will continue to find encouragement and helpful suggestions here. Let me know if there is anything you’d specifically like to know, even about the kids. If I can share it while still protecting them, I absolutely will!

Oh, and…I missed you!

Seeing the Light

Seeing the Light

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

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.”


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

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?


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?