about Communication: sharing the diagnosis with your child
I went by the library to pickup a few books I had on hold. One for The Younger: How to Talk to an Autistic Kid, and this one for The Elder: The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents).
I thumbed through it and was really excited about it. 
Then I had the worry…What if he doesn’t want to read it? I mean, I think this is something that he would want, and I think this is something he would need. But he has never asked me anything about autism. And if I approached him he responded with the annoyed tone of a teenager. My best strategies so far have been to set something up and just do it. Find videos, make him watch it. Find books, make him read them. Find games, make him play them. He does that with no issues. But have a conversation about this? Forget about it. How do you communicate about a communication disorder??
This book seems different than the books I’ve seen in the past. It is a survival guide geared for ages 8-13. It’s more like a textbook with real-life stories for examples, instead of social stories of how to act in certain situations – but it also includes solutions such as these. The first 7 chapters cover “What is ASD?” in a very kid-friendly presentation. A whole chapter is dedicated to Sensory issues. If I was THe Elder, I would think it was really cool, thus the reason I checked it out!
After School Convo:
M: Hey E, I wanna show you the book I got for you at the library today.
E: Hold on! (impatient tone – making me nervous) OK, I’m coming (happy bouncy tone – nervousness gone)
M: (Showing him the cover and just letting him read the title) I got this for us to read together.
E: (no response)
M: (Flipping through the pages so he can see all the pretty colors and pictures) I think it will help answer a lot of the questions you might have about autism (assuming he had them, of course)
E: (no response)
M: (wondering if this was a bust and glad I got it from the library before purchasing) I thought maybe we could go through one chapter at a time.
E: (he gets up quietly and walks back down the hallway as he responds) Well, I have run out of books to read at night.
(Note to self: pick up more chapter books from the library)
M: (yelling after him down the hall) And if you like it and think you can use it for the rest of your life, we can get your very own copy!
E: Sure.
Yes!! My foot is in the door! Now I just need to get to Chapter 6 “Think About it, Talk About it” which clearly states “Ask Questions.” Because you know if it is a rule in the Survival Guide, then he must follow the rules! I think he will thank me for it…
More later as we begin the journey…
How do you communicate with your child about his/her diagnosis?
about Moods (part 2): natural relief is simple
Finding relief from my moods naturally has been very simple. However, Simple is hard to do in an overly complex world. Simple is also much slower than I’d like, especially in today’s “microwave” world where we can’t go/do/think/talk/play/eat fast enough. Simple is really more like a crock-pot: Get your stuff together, have Patience, reap your reward with something that brings great Pleasure. I think the difference in the processes is that the former has Pleasure in mind first – before I’ve had time to Get my Stuff Together. And forget about Patience! Make me to wait for my Pleasure and I might have to give you a piece of my mood – despite the fact that “you” might be an inanimate object. Sound familiar? (please say yes.)
In the latter process, the Pleasure or Joy truly is a reward because even though we know how yummy and tender a crock-pot meal will be when we set out to make it, we still beam with Excitement when we cut into the meat and it falls apart, we moan with Joy when that first bite just melts in our mouths. The Patience part can still be hard for some of us who are tempted by the aroma, but we know that it will be worth the wait once it’s ready (plus it’s still uncooked – gross).
Mood relief has definitely been a crock-pot process – much longer for me, so my hope is that I can shorten the process time for others. But it does take time. I was on the “culprit” medication for 3 years. I am giving myself 3 years to be off of it for me to expect to be back to “normal” (after that I just might lose my Patience!). I have about 8 months to go!! But I already feel more and more like my old self every day for the last 6 months! I speak in terms of detoxing off a prescription, but the fact to remember is that my moods began before meds (thus the “need” for meds). But with the research I’ve done and the experiences I’ve had, I’m confident that I’m on the right path to healing and have put The Brothers on the right path to health. I still learn something new everyday, but everything seems to be flowing in the same directions and I can’t wait to slow-cook these bad moods right out of my life!
So let me just tell you the answer first, and then backup and detail the solutions that might also work for you like they have worked for us.
Consider the following cycle:
(That’s an original Google Drawing right there, folks. Be impressed. I might copyright it, so don’t go stealing it without sharing my blog with 10 people. Or buying 10 copies of my future book that I promise to write one day.)
This is truly a cycle and it can be either positive or negative. And depending on circumstances can be a downward spiral. Bad Day –> Bad Choices –> Bad Food –> Bad Mood –> Impulsive Choices –> Impulsive Eating –> Impulsive Beliefs (Fear) –> Wimpy Feeling –> keep–> spiraling –> down –> ward –> until –> you –> burn –> out.
It’s hard to pinpoint where on this cycle we enter. The tricky part is that “Choices” can involve both mental AND physical. First you think it, then you do it. But “Choices” can also involve neither. For instance, you don’t have an opinion on a topic, therefore you might be complacent. And “Choices” can also just involve one of the two. Like, you don’t think before you act. Or, you think about it all the time, and never make a move. I believe it really depends on our Habits because our Habits are like our masters that we blindly obey. Mental Habits are automatic thoughts/associations (like I think YUM when I hear the word “chocolate”) while Physical Habits are automatic actions (like I put my keys on my desk when I come home (in theory)).
Instinctively, I want to jump from “Choices” directly to “Mood/Attitudes/Beliefs” (perhaps a bad Habit?). I tell myself, “I just need to get over it. God has given me so many blessings, why can’t I just buck up and appreciate them? From now on, I CHOOSE to be happy/joyful/thankful/fill-in-the-blank. And to celebrate my new great attitude, I think I’ll sit on the couch and eat some of this comfort food over here so it won’t be so painful.” Sound familiar? (please say yes.) Wrong direction, Jen! Derailing! Back it up!
What doesn’t seem intuitive me, but I’m quickly learning to be true, is that if I direct my Good Choices in the direction of what I do for my Body, my Mind follows suit, naturally. And something about the natural flow of that soothes my Soul. Bottom line, we must take better care to nourish our bodies. Maybe even, I daresay, make it a higher priority than nourishing our minds. Because when we nourish our bodies, we give life to our minds. It’s hard to nourish a dead mind…in my opinion, at least.
The good news is that we can make a U turn at Choices whenever we want (and as often as we need to) and get going in the proper direction. Good Choices –> Good Food –> Good Mood –> Better Choices –> Healthier Body –> Healthier Mind –> Healthier Spirit –> Stronger Person!!
In upcoming posts, while I’m sharing some strategies that are working for us, I’d also like to debunk some myths about nourishment. I know from our experience, nourishment is not hard to find and it doesn’t break our budget – two common concerns I hear from others. I’d like to share how we find our food and how we afford it. What are some other myths or obstacles that hold you back from taking better care of your body? Please share your comments and feedback!
about Moods: finding relief naturally (part 1)
I’m anti-prescription when it comes to treating mood issues. I’m not against it for other people IF it is working for them. In fact, I wasn’t against taking a prescription myself when I thought it was working for me. The problem was that it was working against me, and I was blinded by the short term relief I felt when I started the regimen. Once I realized I was adversely reacting to my meds, I worked with my doctor to wean me off one, and then a year later said buh-bye cold turkey to the rest of them. It’s been almost 18 months that I have been 100% medication free! Including NO tylenol et al, NO allergy meds, NO vaccines, NO antibiotics – nothing prescribed or over-the-counter. Yay for me!
But…
My moods suffered. Not constantly. But
lots
of
mood
swings.
I do believe that I have earned my moods swings. After all, parenting is tough. Parenting special needs kids is tougher. Plus an Aspergian (a very adorable and loyal and all around great guy, I might add) for The Hub and that’s the tune that gets my moods “just a swangin’!” And when I swing, I take The Hub and The Brothers with me. Unfortunately, a family that swings together does not swing together, if you catch my drift. I’m proud to say, not one of us uses medication on a regular basis. The Hub and I are both 100% med free. The Brothers are 99% med free (allergy season is a bear in our region).
I have been working on my diet for the last 18 months, beginning with a clean slate (literally, I fasted for a few days). It was then I took out red meat and soy and some other things. NOT because I didn’t like eating them. NOT because I had an adverse reaction to them. I only took them out because they are so hard to digest and digestion takes up energy and I wanted my body to use its energy to HEAL, not to digest. I knew it would be temporary when I started but, I got a hold of some resources that made me so glad that I stopped eating them (The Omnivore’s Dilemma, for one). Very good and important information that everyone ought to know, but now I know it’s only part of the story. And to stop there is very dangerous – to me and the victims of my mood.
In the next couple of blog posts, I’m going to share some of the remedies that are so far working for our family. I set out to fix my own ability to cope with my circumstances and discovered many overlaps for each member of our family. If you could use this information, please include comments/feedback for me to address in the sequels of this post.
Now for the rest of our story…
about Fun: fun trumps hard work
So yesterday I was informed by The Brothers that last year, Summer Homeschool was more fun than this year. Bummer.
Every summer, me and the boys do a little homeschooling in the mornings for 2 hours a few days a week. It keeps them structured, and it helps me work on skills they struggled with during the school year while reinforcing their other skills to reduce regression when the school year begins. This is particularly helpful because the transition is such a stressful time (for all of us) that their energy is freed up to only wig out about the socialization, instead of wigging out about that AND academic skills.
When we first started, these “academic” skills were more like OT – cutting/drawing on the line, gluing things together without a freak-out, yoga and calming-strategies, etc. But last summer, we actually worked on writing and reading and math, etc.
Sounds real fun doesn’t it? I like to think I made it fun since I’m pretty fun and all…
This past school year, their teachers had no suggestions on skills they needed to be working on. Not even social skills or anger management! #proudmama
So I thought I would make Summer Homeschool more “fun” this year (obviously only by my definition). We still write and read and do flashcards, but I added a Character Building unit. I got tools from various places and people, but have based it on the Fruit of the Spirit in Galations 5:22-23. The thing is that they have loved everything about the unit. The worksheets, the Bible study, the videos, the “crafts” (its just coloring and cutting – The Younger should teach the crafts portion. He has more artsy genes than all of us put together!), and especially the music! So I was really scratching my head on this one. We haven’t been as hard core on the writing and math this summer. As a matter of fact, I felt like I was too diligent last summer on academics and resolved to be a little more laid back this time around.
So what did I do differently last summer that was sooooo fun?
I found out that it wasn’t what we did during school hours that captivated them. It was what we did after we dismissed. We had a Cooking Class (that was code for “lunch”). They helped me make lunch and they would write down the recipes. Nothing fancy. Sandwiches, spaghetti, “good meat” and rice (will post that recipe another day). Some days, I would give them a “test” and they would have to make the rice all by themselves (rice + water + rice cooker).
I learned that it didn’t matter how much I drilled them last summer or how hard they worked to try to figure out that analog clock nonsense. What they remembered, and ultimately labeled the entire program, was the fun they had making a mess in the kitchen together. Therefore, this morning I announced that we would start school with Cooking Class today and they got to vote for what they wanted to learn to make.
The verdict…Breakfast Casserole…
This made me a little nervous because I “hide” good-for-you stuff in this recipe and secretly put onions in it even though they swear up and down they hate onions. But it worked out! We had a nice brunch (with leftovers) and now we are off to the pool!
And so “fun” has been reinstated into the curriculum! Maybe now I can pull out those flashcards without feeling like a math nazi.
how we made our Breakfast Casserole
Allow me to translate…
1. Fry 2-3 strips of turkey bacon and set aside. (Since we use uncured turkey bacon, we have to add a little coconut oil to get it to brown and look like bacon and produce bacon grease.)
2, 3, 4. Finely chopped 1/2 an onion and saute in the bacon grease until translucent.
5. Add 2-3 cups hash brown potatoes and brown.
6. Cut the 3-4 bread slices to fit the bottom of a casserole dish. Ours is from Pamela’s gluten-free bread mix.
(The Elder added Step #7 in his notes: Eat Extra Bread).
8-12. In a bowl, beat 4-5 eggs with about 1/4 cup milk (we used unsweetened coconut milk), salt, garlic powder, and any dehydrated/powdered veggies you want to hide (today it was “spinach” – code for anything green).
13. Crumble bacon (we cut into strips with shears)
14. Layer the potato/onion mix on top of the bread.
15. Layer more veggies you want to hide.
16. Layer the crumbled bacon.
17. Pour the egg mix evenly over the entire dish.
18. Top with freshly ground pepper.
19. Bake in a preheated 375 degrees oven for 20 minutes.
20. Yeah, I was the only one washing dishes here…Oh but The Younger did wipe up spilled eggs off the kickstool!
21-22. Layer cheddar cheese on top and bake an additional 5 minutes. (we used Daiya Foods Cheddar Shreds)
23. Enjoy!
Me: Do you think you’ll know how to make this on your own now?
The Elder: Yeah, now that I have the list of ingredients and the steps.
about Eye Contact: what I learned from my almost 7-year-old
The Younger discovered an innovative way to get The Elder to make eye contact with him today.
Standing about a foot away from him (and at the top of his lungs I might add), Y was calling his E’s name over and over (and over and over) to get his attention to show him his favorite part of the skit at VBS. When E continued to appear to give the Lego Minifigure more attention than to Y, Y sighed heavily, regrouped, and then persuasively (imagine him dangling a carrot chocolate chip cookie in E’s face) said,
“It has pictures…”
That did it! The Younger had The Elder’s undivided attention after that! Of course, there were no pictures, just a visual component to the communication.
All I know is that I get exhausted saying his name over and over again trying to get his attention (Thank goodness his name is only 2 syllables!). I know he’s listening even if he’s not looking, or even if he’s in a different room or level of the house. I understand that he actually can hear me better if he doesn’t make eye contact. And sometimes he will even respond by saying “I’m listening” before I get to the 10th iteration of his name. An improvement. But who likes sharing something with someone who has his attention split? No matter how skilled he is at processing multiple streams of data with no eye contact, my neurotypical brain has a hard time adjusting to that fact and still needs to see his eyes to feel like I was heard. Whether I’m sharing a heart-warming story or if I’m asking a question or if I’m announcing what day it is. It’s a validation. Some days I forego it. Other days I remind myself that I’m not the only one who needs a little validation – he will encounter many who will appreciate his eye contact. I’m actually impressed at the level of patience The Younger exhibited (a rarity) to come up with such a creative strategy (creativity comes very naturally to him).
That leads me to some points to ponder about The Elder’s perspective. So just saying you’re trying to “show him something” doesn’t work – maybe too general or vague?? Perhaps “It has pictures” with the corresponding persuasive come-and-get-it intonation (maybe… then again, maybe not. I bet monotone would get his attention faster) generates enough interest and curiosity for him to actually look to see. Any other thoughts? How do you handle lack of eye contact? Better yet, if you struggle with eye contact, what other insights can you offer?
Well, I’m totally stealing The Younger’s strategy. Thank you, Son!
about Avocado: it’s a Superior Food when it’s organic
So far my favorite food item since starting my current eating plan is AVOCADO! A Super Food to boot! I always have liked it, even as a kid, but never really bought it unless I was planning to make guacamole or it came in the sushi I was eating. To recap, I’m tweaking my already gluten-free diet (since 2007) to also be diary-free (soooo hard), and other limitations – all to reduce systemic inflammation, which has caused me chronic pain, break-outs, and has put my autonomic nervous system on high alert. Yes, it’s hard, but it’s worth it when I feel normal, like a productive member of my family and society, and I’m not afraid of what I might say or do out of pain or an impulsive fight or flight moment of sensory mayhem. AND…and…and… the best part – I don’t have to take medications – one of the triggers I feel got me into this mess to begin with. I just have to watch what I eat!
This eating plan has also encouraged me to go organic in everything I can, so I splurged and got the organic avocados…actually I sent The Hub. I would have wavered by the 10 for $10 sign posted for the “regular” avocados for too long, and he just gets what’s on the list. Go Aspies!
Well Oh.My.Goodness it was the Best.Move.Ever.
- They were bigger. Which surprised me because organic apples are tiny compared to some of those monster apples at the store. But the larger size made me feel better about spending 3x as much – almost guilty even because organic ended up being all around the better deal.
- Believe it or not, they don’t get overripe as fast either. That was also contrary to my previous belief about organic.(Organic bananas last longer too if you cut them at the stem and not break them off at the bunch’s “hub.” fyi).
- They weren’t as bruised on the inside. Or even at all! Fortunately for me, bruises are just as yummy, but definitely an eye-sore.
- They taste so much better. Just more flavor. It wasn’t necessarily sweeter, but richer, creamier, and more avocado-ier.
- They have a much firmer consistency. “Regular” avocados I could only scoop the flesh out with a spoon. I never understood how to dice avocado because they were always so mushy – which was fine for guacamole.
I do believe that all avocados are Super Foods. But I have definitely been won over by organic. I keep them in a brown paper bag until they turn black and “give” in to a gentle squeeze. I like the outside to be black (no green skin allowed – I also do not like green bananas – so if you like green bananas, you might like green avocados) before I cut into them. Unfortunately, this gives them time to get overripe, bruised, and mushy. But this hasn’t been a problem with the organic variety.
Why does organic make a difference?
My belief – which is swayed by reading Michael Pollan and about Joel Salatin – is that organic produce is not hindered by chemical pesticides. Because they have to fend for themselves, they are bigger and better for us naturally. They don’t become “lazy” or “wimpy” foods, but they develop their own immune system (such as thicker skin to prevent bruising or keep pests out) to survive instead of relying on man to do it for them. So they become Superior Foods! (Organic meats on God-intended organic diets in God-intended environments follow this same concept. But that’s probably another blog post for a different time.) Furthermore, the nutrients they develop to fight off diseases are passed on to us – the consumer – and their nutrients help us to fight off diseases too. Thank you, organic super foods! You truly are Superior Foods in my book!
A friend told me to put them into the fridge to stop the ripening process, so that’s what I did and yes, it worked! The avocado pictured below was bag-ripened for about 2 days and then refrigerated for about a week.
Isn’t it beautiful?
I used a regular knife to halve it, but spoons don’t work so well to scoop out the flesh since it is more firm. I’ve heard of avocado knives before, but found a very functional substitute – the butter knife! It slices them thin and gently “scoops” them out without disturbing the rest of the fruit!
Here I layered the slices atop a quinoa cracker and topped with some fresh alfala sprouts – direct from the sprouter. I think the sprouts needed a little more sun – they weren’t too green.
The only thing that would have made this snack more perfect would have been some tomatoes…
about Mug Cakes: a little variation and flavors, please
Updated on 4/17/12: Added pictures, courtesy of The Hub, and a warning!
Please refer to my previous post for the Basic Millet Mug Cake recipe.
The Hub wanted in on the mug cake action and since he isn’t on the same diet yet, I made his a little indulgent.
Stage 3: Chocolate Mug Cake
Simply add 1 Tablespoon of unsweetened cocoa (or cacao) to the basic recipe. And follow the rest of the directions.
This is Stage 3 because of the caffeine in the cocoa. For The Hub, I did substitute 1 Tablespoon Grade B Maple Syrup instead of stevia. He seemed quite happy with the results. That would be “Stage 4″ though. Ahem. I know. There is no Stage 4.
Stage 2: Spice Mug Cake
I mixed the following spices in a tiny tupperware container to make sure I had the right ratio.
1 tsp ground cinnamon1/4 tsp ground cloves1/4 tsp ground nutmeg1/4 tsp ground gingerThen I added 1/4 tsp of the mixture to the basic recipe. I think I could have added 1/2 tsp though.
Additional Mix-ins and Toppings:
I’ve had success with these thus far. Try one or more of the following:
- 1 tsp of finely shredded coconut, unsweetened
- chopped walnuts (or almonds or pecans) – I mixed these in and I think it made the cake a little lop-sided, BUT it did not affect the taste. I think I will chop them finer next time.
- 1/2 tsp of whole flaxseed – Be sure to chew these up to get the omega goodness out of them. I recommend sprinkling these on top either immediately before you cook it, or immediately after it is finished cooking.
Update: Spice Mug Cake Results
Before nuking it. I also added a little bit of coconut and some chopped walnuts.
Right after “baking.” We tried to get a picture of it rising above the mug inside the microwave, but failed.
Light, moist, and fluffy texture!
WARNING! Non-egg replacers result in a dense, tacky, oatmeal-like texture. Bleh! I do not recommend!
Future experiments may include pumpkin or zucchini. Any other suggestions?
Still trying to find a bread-like cake for sandwiches, but no such luck. I ended up going to the store and picking up a box of Quinoa crackers and a box of Buckwheat crackers. They are pretty big and wafer-like, so it was sort of like toast.
about Mug Cakes: trying to discover the perfect single serving delight
I think I’ve finally hit the jackpot!
And I remembered to take a picture of it before I ate it all! BONUS!
Q: What is a mug cake, you say?
A: It’s a single serving delight that’s ready in two and a half minutes, right out of your microwave!
I’ve been doing a little bit of experimenting in the kitchen to find a “candida-approved” recipe for a mug cake. That means no chocolate (big bummer), no sweeteners except for stevia, and no dairy, corn, soy, or white rice products. That’s quite a challenge! Since I can’t really have icing on my cake, I was really aiming to find something more of a bread or muffin that I could make a (mini) sandwich of some sort. In this process I’ve discovered some tasty treats and some not so tasty treats.
First, the issues revolved around the dry-to-wet ingredients ratio. I had one come right out of the microwave tasting just like french toast! Not bad if you asked me, but missed the target a bit. CAKE not FRITTATA.
That brought up the egg vs. flax/water substitute debate. Do you know this handy formula?
1 egg = 1 tablespoon flaxseeds + 3 tablespoons water
Only in consistency in baked goods (not in looks). I rrrrrrrrrr-ed it up in my trusty Magic Bullet and spooned it in. It did a pretty good job, BUT the dry-to-wet ratio had not yet been resolved so it was a little on the small side where the center had caved in.
Then it was balancing the sweet/bitter taste that comes with working with stevia. I think it’s something I’m just going to have to deal with. I did add a pinch of celtic sea salt in the recipe below to maybe balance it out and it did the trick. I also stirred all the dry ingredients together in a separate bowl first.
Now it was which flour(s) to use in combination or alone. I have tried these so far:
- coconut flour
- coconut/quinoa flour
- a coconut/quinoa/flax toasted blend that The Hub accidently created when attempting to make crackers, but was so yummy that I begged him not to throw it out. Has a nutty favor like peanut butter which is awesome because peanuts are not “candida-approved.” I have lovingly dubbed it “The Hub’s Nutty Mistake”
- millet flour (ding! ding! ding! We have a winner, ladies and gentlemen!)
Amazon delivered this golden package today and I tore right into it. The Hub purchased it to experiment with pizza crust recipes and I thought why not in mug cake too? I sent him a text message asking him “What is a Millet?” A quick google search and I basically deduced that it is birdseed…..um. ok. BUT this recipe is NOT for the birds!
This is a very basic recipe. Feel free to top with whatever floats your boat! Here I simply topped it with The Hub’s Nutty Mistake. A Stage 3 variation could include a berry topping. Mmmmm that sounds awesome! Along with a dollop of coconut whipped cream…yes, please!
Stage 2: Basic Millet Mug Cake
1 Tbsp coconut oil, melted1/4 cup millet flour1/2 tsp baking powder
(technically not approved, so measure a little less using baking soda instead, if you’re being hard-core. I’ve also left it out completely)1/4 cup water1 egg1 packet of stevia*1 pinch of celtic sea saltPlace coconut oil in a LARGE mug (or bowl as in picture). No dainty tea cups allowed. Melt it in the microwave in 10 second intervals, swirling it around to coat the sides well. In a separate bowl, mix all the dry ingredients well (this reduces stevia lumps – yuck!). Add dry ingredients to the mug, add water and egg and mix well with fork. You have to work fast here because the coolness of the egg will make the coconut oil want to solidify. Place in the microwave for 2 minutes and 30 seconds. It WILL rise above the mug but it will not spill over. It’s cool to watch though – at a safe distance, that is.
*If you want to try this recipe and you’re NOT on the candida diet, simply substitute the stevia for a Tablespoon of raw honey, maple syrup, agave nectar, or sweetener of your choice.
Enjoy!
about Food: recipes can be sugar-free, gluten-free, dairy-free AND incredibly yummy
Updated on 4/11/12: added picture of the curry. This time I used 2/3 cup coconut milk and added two stalks each of kale and swiss chard. Then topped with sesame seeds!
So I’m on this crazy diet food plan that limits most yummy things I crave. I was already fasting meat and dairy for Lent so I thought last week I’d start the “candida” diet while I was already feeling deprived. It sort of broke up the monotony of the misery.
Stage 1 is all raw low-carb veggies. That’s it. Got very boring. Even though most spices are approved, I lasted about 4 days (as opposed to 1-2 weeks, yep I’m a wuss). The best part of Stage 1 was breaking my sugar cravings in those first 3 days. It’s a miserable withdrawal process (read: migraines and intense cravings for all things starchy and sweet) and I’m glad that it’s over. By the 4th day, I was confident to enter the kitchen without eating everything in it, and I had more energy – but I wanted to cook (before I turned into a rabbit). To my credit, I still stuck with only veggies for the rest of the week.
This week I started Stage 2 which allows very specific nuts, grains, meats, and fish (still poo-poos sugars of all forms, including fruit, except stevia). I’m still trying to eat raw veggies once a day for a snack, but am very happy about having more options!! I’m supposed to stay at this stage for as long as I want. I have some specific skin problems that I’ve chosen as my indicator to stay in this stage. When it has become manageable, I’ll probably move on to stage 3. By Stage 3, it mostly follows a “paleo” diet, still limiting fruits to apples and berries. If you google “candida diet,” you will see varying lists of approved foods and those to avoid. I’ve just been using my gut instinct (no pun intended) rather than adopting one particular site’s philosophy, but my starting point was here.
Some of my favorite concoctions thus far I’ve included here:
Stage 1: Cauliflower with Avocado Dip
This dip was adapted from my original childhood favorite palate pleaser! Very simple.
1 avocadococonut milk, unsweetenedstevia or sea salt, to taste (optional)Raw cauliflower florets
Scoop avocado flesh into a small bowl and mash with a fork. Add coconut milk little by little, and mix until smooth (some chunks are ok and a yummy surprise). Add stevia if you like it sweet, or add sea salt if you like it salty. Dip cauliflower and enjoy this yummy snack!
Stage 2: Sardine Yellow Curry over Brown Rice
Updated on 4/11/12: added picture of the curry. This time I used 2/3 cup coconut milk and added two stalks each of kale and swiss chard. Then topped with sesame seeds!
Another dish I made up as I went as I pulled stuff off the shelf. This was quick and delish! This was also the first time I’d ever eaten sardines before. With the limited list of approved fish, I had to double-dog-dare myself to buy some. They are quite yummy and not too fishy. Reminds me a little of canned tuna (not fresh tuna). I wasn’t brave enough to try it straight out of the tin, so I decided to make it in a curry which makes EVERYTHING taste amazing. Turned out to compliment the dish well, but the kale I think is what stole the show here.
1 Tbsp yellow curry paste1 Tbsp coconut oil (my new obsession!)2-3 cloves garlic, minced1 onion, largely diced1/2 zucchini, julienned1/2 yellow squash, julienned1 tin of sardines in water, drained1/2 cup coconut milk, unsweetened3 stalks of kale, choppedcooked brown rice
Stir-fry curry paste in coconut oil in a wok on Med high. Add garlic and onions and stir-fry until just starting to get translucent. Add both squashes and stir-fry just until tender. Add sardines, breaking them up in the wok and mixing well with veggies. Add coconut milk and stir until curry is dissolved. Reduce heat and add kale. Mix well. Remove from heat when kale starts to get wilty. Serve over brown rice.
I’m in mourning because I just ate the last bowl. =o(
As I find post-worthy recipes, I’ll share my discoveries. And hopefully I’ll take pictures before I eat all of it! Do you have any recipes to share with me?
about Carpe Diem: at least I’m seizing something
If you never read any more of this blog post of mine, you MUST, without fail, follow this link and read Glennon’s blog post.
I’m glad I took the kairos time (that will make more sense if you’ve read her post) to read this raw and beautifully written article. I think all parents should read it, but especially the parents of special needs children. Its message, I believe, goes further to affirm us as we face the very different challenges on a daily basis.
I get caught up in the guilt of not “enjoying every moment of their childhood before it’s too late.” I can’t honestly say I loooove parenting. It’s not my gift. It’s the hardest thing I’ve ever had to do. But it is the most rewarding thing I’ve ever done. I do loooove being a parent, or as Glennon says “having parented.” I have an influence on them, not just as their parent, but the one and only role of being their mother. I’m way far from perfect, but at the end of the day, I’m learning to pat myself on the back for getting though another day – for finding the one (it’s usually more than one but I like to set myself up for success) instance of hope, glimmer of beauty, evidence that something I tried to pass on actually did, proof that some therapy I paid for was worth its investment.
It reminds me of my favorite clip from the movie “The Back-up Plan.”
You know, when I really think about it though, I’m actually very lucky because statistically, I feel like I have more opportunities to seize moments of hope and beauty. On those days that I’m up to my eyeballs in tantrums, strewn legos, and broken computer peripherals and I look at the clock and it’s only 8:30 in the morning, I need that moment when I hear the distant, unprompted toilet flush. I don’t know if that makes sense or not. Maybe a story would help illustrate.
Today, we took The Skipper Dog to the vet. It was quite an intense appointment (about a different kind of seizing
), so both me and The Hub went and of course had to bring the kids. We left them in the lobby with the directions that they were in charge of only themselves, to make sure they made themselves make good choices. About after 15 minutes of being back with the vet, I heard The Elder screaming in the lobby. I went out there and he was sitting criss cross applesauce on the bench screaming:
E: “Y is touching me!”
M: (to The Younger) “Don’t touch him.”
Y: “But I want to sit here.”
M: (to The Elder) “Choose a different place to sit”
E: “But that place has a scary thing, and that place is too close to the vent, and that place is touching that plant, and that place is near the magazines.”The Younger couldn’t really top that so (with maternal encouragement) he moved to a chair on the other side of the lobby. I was able to return to the patient room without missing too much of the vet’s testing-results spiel.
Let’s list the obvious triumphs. (triumphs that I must say make me one proud mama!)
- I was comfortable leaving them both in the lobby (not without my super sonic ears open to eavesdrop on their every word)
- The appointment was nearly an hour long and I only had to intervene once.
- There was 15 minutes before the onset of the intervention.
- The intervention was pretty painless and straightforward.
Now the not-so-obvious triumphs.
- The Elder was sitting on the bench – and criss cross applesauce to boot. (This would be opposed to wallowing in the floor or running outside in the parking lot)
- He verbally expressed his case of why he should be allowed to remain where he was seated. (as opposed to physically expressing his case with his fist or teeth or saliva)
- The Younger complied on first request (not without whining, but without any oppositional defiance)
Finally the triumphs that could easily slip away if I wasn’t intentionally seizing them.
- The Elder had all of his clothes on, including his shoes.
- Both kids were wearing their glasses at all times.
Therefore in a single event, I’m able to seize greater than 100% more triumphant moments! Sometimes all I can walk away with is the fact that “Both kids were wearing their glasses at all times,” and sometimes I can’t even claim that moment and must settle for “We found their glasses before we left, flung atop the the silk tree in the lobby, and eventually repaired them, at no additional cost.” Maybe I’m crazy, but that makes me feel lucky!
about Life Skills: dining etiquette for a hopeful future
In 0.5 seconds… a teaspoon… with a quarter cup of rice and rib meat precariously balanced atop… racing toward his awaiting, gaping mouth about a foot away from his bowl… and his eye contact and attention are on the basement door as he tries to discern the sounds coming from the computer downstairs.
The Elder’s massive spoonfuls of grub being shoveled into his mouth at a high velocity rarely reaches the goal of getting food into his mouth as much as spilling it all over the table, chair, and floor. (Thank goodness we are at the point I can omit “walls” from that list!) I think his reasoning is “the faster I eat the sooner I can be done with this miserable task.” In this particular scenario I could probably tack on “and check out what’s happening on the computer.”
Those who have known him since birth know that motor skills and sensory defensiveness have not allowed him (or others in his vicinity) to enjoy how wonderful the experience of feedings can be. When it comes to meals that require utensils (mashed potatoes for some reason doesn’t fall under this category), he is actually a slow eater. He just stuffs it all in his cheeks like a chipmunk as fast as he can and then slowly swallows his food. It appears to be tactile foods like oatmeal or rice and boneless meat of the day (again I ponder why mashed potatoes aren’t on this list). Medicine also makes the cut to be swallowed slowly. Blech! It takes him so long to swallow a teaspoon of tylenol regardless of what flavor it is. But I digress…
I hope today is a turning point for this dilemma that has plagued our dinner table for years. I pray that we will have family dinners in the future of all of us sitting and eating together instead of one of us constantly asking if he can be excused before we’ve even started eating – or even have made it to the table!
As I watched that mountain of rice topple over (thank goodness back into his bowl!), The Ever Elusive Brilliance surfaced…
Brilliant Life Skill of the Day:
“If the food doesn’t fit in the spoon, then the bite is too big.”
I really wish I thought of this sooner. So simple. As soon as this logical explanation left my lips, I could see him reprogramming his brain and he began to process how much food was actually on his spoon. He not only slowed down to mentally calculate the food to spoon ratio, but he also significantly reduced the probability of speaking with his mouth full and we actually had a small conversation about Amazon.com.
We have also employed a number of other “tricks” to reduced the stress of mealtimes – a big one being “keeping them seated” since without that they were just grazers and “meals” were a fleeting concept. What trials have you encountered and how have you resolved them?
about Early Retirement: Bring on those dirty dishes
It is known that discipline, structure, and self-motivation have the potential to propel young ambitious ones to afford early retirement. But I have discovered the opposite is true…but with the early retirement of our dishwasher. Yes! Call me crazy. Demoting our dishwasher to a glorified dish rack has somehow brought out the discipline, structure, and self-motivation in my family. I might even dare say, it has brought order to our chaos. Well, at least for the kitchen.
It all began when I decided to “spring clean” our dishwasher. The door panel had stains (I’m hoping from coffee and tea) and crusties (displaced rice and grits, I pray) and really gross floaties swum around the bottom (don’t really wanna guess). I was able to do a really great job of scrubbing and making it shine and glisten… until I got to the floaties. I delegated that to The Hub as I suspected that the standing water was probably a sign of a clog and I wasn’t quite brave enough to venture there. It’s not as much OCD or germ-a-phobia than it is a tactile aversion. I was wearing heavy duty gloves but there are some tasks where only the imagination suffices to make me avoid it. In the meantime, I was not onboard with putting another dish in it for its intended use, not convinced it could fulfill its purpose. I’m sure I would’ve had nightmares about dishwasher floaties coming after me every evening until The Hub remedied the issue.
No dishwasher?!? Oh no! Not sure which nightmare was worse…
I reminded myself that washing dishes by hand is not a big deal. The Brothers and I had spent most of the summer at the beach in a small condo that had a dishwasher, but with just the three of us, we used so little dishes that it rarely got filled up to justify running it. It was actually more irritating to try to fill it up than it was to just go ahead and wash them. Besides, when I was growing up, my mom only used our dishwasher to blanch ears of corn. Washing the dishes by hand was just something that we did, often together. And when The Hub and I first got married and moved into our first apartment, we stored our plastic shopping bags in our dishwasher. I remember actually baking his birthday cake and hiding it in the dishwasher because I knew he would never look in there and accidentally find it before its debut. So a long time ago, in a galaxy far, far away, washing dishes by hand was my way of life.
So I decided I wouldn’t just succumb to washing the dishes myself…I decided to commit to washing the dishes myself.
It’s a scary commitment. It’s not like at the condo where I took the path of less irritation. On a baking day at the condo, it sure was nice to have the option of tossing them in the dishwasher and let it take care of the greasy or caked on mess. But once we were a family of four again and in non-vacay mode, the daily dishes and pans consumption had increased. And once we had returned to our 2 story home, corralling the dishes is more difficult. It was not uncommon to load a kitchen full of dishes, only to find another sinkful-worth of dishes scattered throughout the house. How would I ever keep up without the dishwasher?!? I think I had a mini panic attack as I faced my dilemma. This decision may have started out as necessity, but turned into an opportunity.
Changes which have occurred since the early retirement of our dishwasher:
- Discipline = Cleaner Kitchen Counter = Happy Mom = Happy Family
Before: Because we make our own bread, it seemed as if our counter was constantly littered with crumbs. But it also had its fair share of coffee/tea rings and other unidentified objects.
After: My mom taught me that after every dish-washing exercise I must wipe up the excess water in the surrounding area and the table and seats. Well, since I got the rag in my hand already, I might as well take care of all the counters and the stove to boot. It really doesn’t expend that much more time or energy especially since its 2-3x a day.
- Structure = Less Kitchen Counter Clutter = Happy Mom = Happy Family
Before: Dishes would pile up beginning at breakfast until right before bed when dishes got loaded into the dishwasher. Just looking at our inventory all day long was enervating.
After: Breakfast dishes get washed and are dry by the time lunch comes, when they just get reused. Ditto for dinner. I’m thinking about a serious inventory clearance sale in our future.
- Self-Motivation = Cleaner Kitchen Floor = Happy Mom = Happy Family
Before: We relied on The Skipper Dog to do the daily heavy lifting. But sometime the crumbs and the homemade gluten-free flour experiments got too entangled with his shed hair for him to successfully lap up.
After: The Hub has been bringing out the broom at night while I’m washing the dishes! On his own accord!
- The kids are bringing me their snack plates and clearing the table on their own now because they see I’m busy washing the dishes (and because there is less clutter they have a place to safely put them).
- I cook more. Even though it produces more dishes to wash. Maybe it’s the clutter-freeness of the counter that brings out the Rachel Ray in me. I do find myself being more efficient while cooking so as to minimize the number of dishes I wash.
- I’m hoping this will possibly reduce our energy bill and water bill.
There is no more standing water in the dishwasher from the clog. I’m not sure if The Hub fixed it, or just sucked it all up with the wet-vac, and I’m not sure if I want to know the truth because I don’t want to be tempted to cave.
about Anger: Why?
So I’m doing a self-guided anger management study. I’m really glad that I picked up the book out of the free bin at McKay’s because I’m not sure I would have paid money (or used credit) for such self-inflicted torture. It is a tough read by nature because who really wants to admit that something makes us angry? That I can be controlled so savagely by an emotion that, in theory, only I, myself, can (and must) control.
In your anger do not sin: Do not let the sun go down while you are still angry, and do not give the devil a foothold.
Ephesians 4:26-27
Anger is like the ultimate vulnerability for me. Whereas some people can use that adrenaline to be motivated, like win a game or complete a task to perfection, I, on the other hand have a history of utilizing that extra energy to babble nonsense without end and/or blubber like a wimp, then throw my hands up in defeat. It’s not very productive or flattering. It leaves me feeling embarrassed, out of control, and overwhelmed at the new messes I’ve just created.
I have been surprised at the unlikely places that Anger rears its ugly head in my life. I was really blind to how much I reacted in anger on a daily, sometimes hourly (is minutely a word?), basis. The many faces of Anger eluded me in my general happy-go-lucky, que-sera-sera, God’s-got-my-back mentality. The study is teaching me to recognize these quick-to-fade moments before they get away. (I feel pretty ridiculous when I’m wavering back and forth, “I think that made me mad, but I’m not sure.”) But the most helpful skill I’m trying to master is categorizing both the big and small episodes into one of 3 categories
Anger is defined as an intent to preserve personal worth, essential needs, and basic convictions.
by taking the time to question why I was feeling angry (frustrated/unloved/manipulated/betrayed/jealous/etc) in that instant. I keep asking myself Why? until I come to a conclusion over which I have 100% control. It is a liberating moment. The final solution is not always apparent nor remotely related to the problem at hand. Sometimes it is simply admitting that the only control I have in the situation is to forgive myself and forget it.
Now the ease of that process comes under the assumption that I’ve had enough sleep, food, the planets are all aligned, and no one is in my personal space. In the more common doozy situations, when I am unable to maintain a clear head, I have scripted a “life boat” prayer to say when I’m just too upset to contemplate the right thing or have already overstepped my boundaries.
Lord, please provide me with a positive and productive distraction right now. Amen.
I’m only on Tenet #4 of thirteen so I hope I’m not digging myself into a neighboring hole with that one. Tossing Why? among the diverse and abundant selection of controversy in my life has led me to face some uncomfortable truths – including that my problem solving skills (which I have previously held in high esteem) have been abducted and secretly replaced by very savvy and creative skills of distraction and avoidance. Hmmm, I wonder why…
about Healing: When the Momma’s happy, everyone is happy
It’s been over a year since my last post. I can choose to feel guilty or celebrate the closing of an era.
I’ve been spending the last year physically and mentally healing. I stripped my slate down to literally the bare necessities. I labeled it “The Year of Non-Commitment” and I followed through with it. It sounds boring but it has been one of the busiest and hardest and best years of my life. My plate stayed full despite my pruning. Migraines and backaches controlled my days. Relationships were strained. And “stuff” kept oozing from the tiniest of crevices. I can’t even imagine how insane I would been had I not already eliminated my duties towards my career, the ASDa board, volunteering, and of course, my blog.
My journey of healing included: weaning myself off prescriptions and over-the-counter meds, detoxing my body and overhauling my diet, participating in a small group study, putting a finishline on a 9-year grief cycle, and investing my new found energy into a self-study and an anger management course, which has in turn freed up a lot of energy for me to do other stuff…fun stuff…like a vacation…without kids…or husbands.
So far in my journey, I’ve been “small group hopping” for 1.5 years. The length of time it has taken me to heal is probably indicative of my inconsistency of attending my groups. But the time I have spent in my groups has been invaluable. First, in teaching me a new appreciation of independently reading the Bible, I’ve been able to reconcile a lot of concepts and doubts and confusion I held in my mind regarding my personal spirituality. Second, in being among friendly people, the social butterfly in me was finally able to emerge from her cocoon. Third, perspective, perspective, perspective. Ever hear the one about If we all put our issues in a big pile and then got to choose an issue from that pile, we all would pick up our own issues? My issues aren’t necessarily better or worse than the next person’s but they are mine – all mine. And while I might covet another parent’s ability to sign their child up for a team sport, I certainly do not covet the responsibilities both time-wise and financially they incur because of that freedom. And fourth, in allowing ourselves to be vulnerable, I not only receive the prayerful support I desperately need from friends, but also can provide that same prayerful support to them as well.
24 And let us consider how we may spur one another on toward love and good deeds, 25 not giving up meeting together, as some are in the habit of doing, but encouraging one another—and all the more as you see the Day approaching.
Hebrews 10:24-25 (NIV)
Now then… I thought I had a pretty good grasp on the scope of my mourning. But I had grossly overlooked the most obvious situation that was overdue for bereavement. Through a family tragedy, I was able to discover I was stuck in the very early denial stage of grieving my miscarriage – The Eldest, I might call him. No one knew about the pregnancy. No one. Not even that we were even trying to start a family finally after 7 years of marital bliss. After the loss, no one still was aware of the existence. The Hub and I mourned in silence with a “Why bother?” attitude. We rescued The Skipper Dog to cheer us up (and boy did he!). Six months later I was pregnant with The Elder. In my head, I thought that I had completed that grief cycle, accepting that God’s timing is impeccable and resolving that if the pregnancy had gone to term, The Elder would not have been born when he was, and his birthday has played a MAJOR role in many of the divine blessings we have received in early intervention. But in actuality what I had done was deny the little being my love. Alongside a dear loved one, I was able to feel her pain so strongly because I realized it was my pain, too. Her graceful and raw way she openly grieved was a window into my subconscious. I’m so proud of her and grateful at how well she is handling her experience. She helped me give The Eldest an identity, ask for forgiveness, and to say good-bye. I can’t thank her enough.
Above all, I’m most proud of my physical healing. I think without it, my mental (nor spiritual) healing could have been resurrected (no pun intended). I contemplate everything I put in my mouth (except for the occasional foot). I’ve successfully weaned myself off all medications. I’ve been independent for 2.5 months! Not even an allergy pill! I use food for medicine or fast for a day when I need it, but mostly try to just stay healthy so I don’t need medicine to begin with. My dietary changes have not only improved my health, but also my budget. First because I conducted a short-term fast (7 days). Water is butt cheap. When I broke the fast, my body decided what I could or could not eat. (Sadly, I still must live a gluten-free lifestyle, which does offset budgetary gains of the new diet.) I have eliminated red meat and pork and only eat fowl in moderation (kids’ leftovers usually). Second, I eat mostly fruits and vegetables. Super cheap – even organic is cheap in comparison to my former diet. I don’t do well with processed corn, like in tortilla chips, but have no trouble with popcorn or kernel corn. There’s something else I can’t handle but I haven’t pinpointed what it is. (I keep eating dairy (my indulgence) and I’m in denial that it affects me negatively in any way shape or form. How could something so yummy be harmful?) Third, I discovered I have an affinity for gardening. Unfortunately I’m a terrible gardener. My green thumb is the novice shade of green. I’m sure it has a lot to do with my attention span and tactile defensiveness rather than ability. But to compromise between love and talent, I’ve started sprouting. I’m pretty darn good at it. And I can eat alfalfa all the live long day. I also grow my own wheatgrass – chock full of antioxidants, my medicine. Much cheaper than the 90-day prescription deals. And fourth, I realized that I really do like to cook. Cooking is so much less expensive than eating out or pre-packaged foods. I can guarantee it will be gluten-free, and with the proper systems now in place, it hasn’t taken up all my time like I imagined it would. After all of these years of letting The Hub hang his flag in the kitchen, I claimed my ground and surprisingly have pleased all members of the family (even visiting relatives). I totally recognize that my attention span would not be in favor for a catering job, but something about cooking for my family makes me feel whole.
Now that the fog has lifted, I’m so much happier and so is my family (I hope so at least). I lost a ghastly amount of weight during the 7-day fast, but have just about recovered completely to my original weight MINUS all the swelling and most of the cysts/fibroids that were forming in my body. That means less headaches, less trips to the chiropractor, better circulation, clearer thinking and more energy. Even when I looked my campiest, I was feeling dramatically better than I had in at least 3 years.
[lightbulb moment:] THIS is why I blog. In the process of summarizing the stuff in my head to avoid rambling on and on and boring the reader to death, a theme just emerges from the pages. (I wish I could brag of writer’s foresight and mad executive function skillz, but alas, I cannot.) When I type on the fly about just the basic facts (plus a commentary or two as I always have parallel thoughts going on. Squirrel!), I’m able to see myself so much better. Awareness is enlightening and frightening at the same time. So this is the lesson I’ve been taught today via this post: It’s been said that if you’re not growing, you’re dying. I’d like to add a twist to that - if you’re not loving, you’re dying. Personal growth is the result of learning to love where I was not willing to love before.
“Are you willing to spend time studying the issues, making yourself aware, and then conveying that information to family and friends? … If some among you fear taking a stand because you are afraid of reprisals from customers, clients, or even government, recognize that you are just feeding the crocodile hoping he’ll eat you last. (October 27, 1964)”
~ Ronald Reagan
I’ve still got a long row to hoe before I can harvest the title “Healed,” but it is so nice to take a big crop of perspective and be able to enjoy the journey – living and loving life today, weeds and all.
about Perspective (Part 2): What does High-Functioning really mean?
What does “Low-Functioning” mean? Likewise, what about “Severe”, “Moderate”, and “Mild”?
I can see how a physical characteristic or wound can be labeled severe, moderate, or mild. I can see an talent, ability or a disability can be described as high or low.
But what do these term mean when used in the context of Autism. Below is just an excerpt of the definition of function. How do we know that we are all using the same one? Are we offending people and not aware of it? Are we assuming these are the names of “official” diagnoses because they are popularly used by the general public?
func·tion [fuhngk-shuhn]
–noun
- the kind of action or activity proper to a person, thing, or institution; the purpose for which something is designed or exists; role.
- any ceremonious public or social gathering or occasion.
- a factor related to or dependent upon other factors: Price is a function of supply and demand.
- Sociology. the contribution made by a sociocultural phenomenon to an ongoing social system.
-verb (used without object)
- to perform a specified action or activity; work; operate: The computer isn’t functioning now. He rarely functions before noon.
- to have or exercise a function; serve: In earlier English the present tense often functioned as a future. This orange crate can function as a chair.
I must admit that in the past, it used to make me extremely irate whenever someone would describe The Elder (or The Hub) as “mild” or “high-functioning.” I even had a mom (who happened to also have a son with autism) tell me shortly after we received The Elder’s dx, “Oh…well that’s the good kind.” These labels offended me because it made me feel like I didn’t have a right to be affected by it or that the impact wasn’t too far from normal. I felt totally blown-off and invalidated. Maybe you can relate if your loved one has HFA or AS? My family (and others on this side of the spectrum) has many high- and low-functioning skills with their diagnoses. Many of which are invisible or intangible because they are mental/emotional/sensory processing skills. Yet because they can read, talk, walk, even run a marathon, etc – the tangible traits – no one knows just how much they struggle every single day to merely get through a day that involves any kind of interaction with another person…even with just their spouse.
On the flipside, it would formerly make me equally perturbed to hear a person labeled as “low-functioning.” Perhaps this person cannot talk, make eye contact, or only expresses him/herself through gestures and stimming and meltdowns. By definitions #1 and #1 (lol) above, these functions are indeed lacking. However, because of current testing procedures and standards this person may be categorize as mentally retarded or psychotic. It fills me with wonderment to imagine just how brilliant one can be if only we had an effective communication tool, as in the case of Sue Rubin.
Severe, moderate, and mild are much more accurate in my opinion, yet I still do not personally 1 like using those terms because “mild” insinuates that a person’s situation is easier than if it were “moderate” or “severe.” That is different for each person. “Severe” would make my heart sink whenever I heard it, and although it is the most accurate descriptor for many people on the spectrum, it was just plain too depressing for me to say.
So I adopted new terminology for my new life-long journey to keep me in my happy place. This way, I wouldn’t get mad at people, I wouldn’t offend anyone (I hope), and I wouldn’t make myself sad over vocabulary words. Over time and nowadays, I accept that people will always use those terms, so I just needed to get used to it and get over it! And even though it still doesn’t make me do the happy dance, I’ve used the terms on occasion, but not without also using air-quotes (with the accompanying intonations) or appending my preferred jargon.
Find Out Alternative Ways to Describe your Loved One with Autism
Instead of: I prefer to say: 1 autistic, has autism, aspergers, pdd-nos, etc on the spectrum, has ASD, has an autism spectrum disorder 2 low-functioning/high-functioning, mild/moderate/severe non-verbal, verbal, on the left-side or right-side of the spectrum, mild/medium/spicy3autism as a general description/explanation for a specific challenge
- Her autism makes her sensitive to noises.
- Because of his autism, he cannot participate in gymnastics.
specific dysfunctions, eg. delayed motor skills, sensory issues, being male,being [insert age here], etc 4
- Her auditory defensiveness makes her sensitive to noises.
- Because of his gross motor skills, he cannot participate in gymnastics (yet).
This is the visual I picture when I used the terms “left side” or “right side.” I really like this image because I’m a statistics nerd Rosenn’s diagram not only depicts a horizontal spectrum of diagnoses, but also a “spectrum” for each point on on the diagnoses spectrum illustrating the range within each diagnosis. Note that the wedge is not a population count. In other words, it doesn’t mean that the right side is more common than the left. It merely means that those on the left side most likely have similar characteristics of autism from person to person. In contrast, those on the right side may have completely different characteristics from individual to individual. So, if there was a comprehensive list of indications of autism, those on the left may have all or most of them checked, whereas those on the right side would have a smaller percentage of the items checked with the likelihood that any two persons’ checked items are not the same.
Clear as mud?
“If you’ve met one child with autism, you’ve met one child with autism.”
–variant of a common phrase in the autism community
1 This is strictly my preferences and not a judgment on those who use the terms in the left column. Yes, I do use the those terms on occasion, but I also prefer to have a clean house…
2 Stay tuned for an upcoming article in this series on the terms autism, aspergers, spectrum disorder.
3 Please do not be offended by my warped sense of humor.
4 A hybrid alternate: referring to the dysfunction as a characteristic of autism.
about Mourning: The Grief Cycle
In the last 3 weeks, I’ve had 2 friends pass away tragically. In one case, my friend is actually the widow, and in the other, my friend and I were once in a small group together. Both are very dear to me. Not because we were best buddies and told each other our deepest secrets. Not even that we went out for brunches or coffee. No regular text messages or emails were ever sent between us. I love them because during the time we spent together, they both made an impression on me of love, positivity, humor, and beauty. Not just in general, but like it was for me.
“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” –Maya Angelou
That imprint on my heart they made is why I find myself mourning so much, especially for their families. Out of respect for their families, this article is not about them, but about the lesson I found about dealing with grief.
Grief stinks.
“Grief is a journey, often perilous and without clear direction. The experience of grieving cannot be ordered or categorized, hurried or controlled, pushed aside or ignored indefinitely. It is inevitable as breathing, as change, as love. It may be postponed, but it will not be denied.” Fumia, Molly. (2003) Safe Passages.
I’ve been fortunate to still have my immediate family here on Earth. Yes, I’ve had family members and like-family members pass away. I can remember the heartache at the time that it happened. But now my memories of them are of joy and happiness I shared with them while they were alive. I have completed my grieving process and enough time has passed that it no longer negatively affects the quality of my life.
Last night, immediately after the memorial service I became extremely overwhelmed. Not only for the obvious reasons, but I had been “relocated” back in time to a place in my life where “normal” was nowhere close to what my new normal has become since then. I was in a building and surrounded by people and memories of that past life that, comparatively, was much simpler, more flexible, more prosperous, and made me more available to be of service to others. I was reminded of the personal struggle of being on the fence of deciding to leave a life I wanted to keep but couldn’t have my cake and eat it too.
It was at the end of the service when the “losses” that I have had to face since then all came rushing back to me. Right there. In the most inappropriate place to be thinking about yourself.
I found myself feeling like a stranger, an outsider watching people mourn and comforting each other. I didn’t know what to do. It was like I didn’t belong. **
Like I didn’t deserve to be there, to be among the hurting, to be hurting.
I became dizzy with feelings I have already once mourned – the rejection, the isolation, the loss of friendships, the loss of trust, the judgment of being a bad parent despite the constant effort I put into it, the judgment that my child has special needs despite his high IQ, that my child is not accepted, that his sibling is not accepted, no birthday party invitations, no one coming to birthday parties, the loss of social engagements and adult interactions, the loss of freedom, the lack of support, the lack of help, the lack of time/money to hire enough help, the ten-fold increase of responsibility, the finality that it really is all up to me and accepting that this is not going to go away, the loss of simplicity, the fact that “Catch 22″ is the way of life, that even the best of friends don’t know how to help so they don’t, that even the best of friends think they know how to help so they do- but they don’t, the loss of confidence, self-esteem, and ultimately mourning the feeling that I had to hide all of these emotions and fears because of the feeling that no one would understand, no one would care, no one should have to endure my drama, and I didn’t want to be pitied.
Why was this happening right now? I’ve been through this already. I’ve forgiven myself, I’ve forgiven people. And fortunately, I have a failing memory so I’m pretty good at the forgetting part too. I know it had to be evident on my face, but I also knew that I was the only one focused on me.
I felt horrible.
I felt insensitive.
I felt guilty.
So I left. I left, again.
The original model of the stages of grief have been expanded in this article I found.
- Shock stage: Initial paralysis at hearing the bad news.
- Denial stage: Trying to avoid the inevitable.
- Anger stage: Frustrated outpouring of bottled-up emotion.
- Bargaining stage: Seeking in vain for a way out.
- Depression stage: Final realization of the inevitable.
- Testing stage: Seeking realistic solutions.
- Acceptance stage: Finally finding the way forward.
I, like many others with children/spouse on the autism spectrum, know this process of mourning, especially the first 5 stages, oh-too-well. It often presents itself as a CYCLE. Not necessarily because of an avoidance of accepting the deck of cards I got or of developing realistic expectations (though sometimes it is!), but because sometimes new things present themselves – things I maybe didn’t know that I was unrealistic, or things where I wasn’t quite realistic enough – that can blindside me and send me all the way back to square Shock. Other times, it might be a former issue that I thought was long gone that rears it’s ugly head again, or a y response that I could go to the bank on getting every single time I presented an x stimulus goes haywire, leaving me looking and feeling like an idiot or liar or both. (Although admittedly, sometimes that unpredictable ‘if x, then y’ outcome is favorable and provokes a different kind of shock!) Because of the constant unpredictability of extreme behaviors and the lack of communication skills, this cycle gets set off daily, and often. A meltdown doesn’t even have to ensue. But the constant effort of preventing a meltdown, or the constant reminder to stop taking literal comments personally, fuels the roller coaster’s engine. I feel like a mouse in its wheel running so hard, but getting nowhere. I dismount, just to remount on the same wheel in the same place and run again.
At the peak of “This Stinks” mode, I hear the voice of our family counselor repeating in my ear “this is the life you’re signed up for and you can’t get stuck here. You have 2 kids that are depending on you. It’s time to move forward.” Cheap shot for motivating me…but sometimes perspective is all I need and I’ve heard her say it enough that I don’t have to call her to hear it anymore (though sometimes I forget and I still call her and then she says it again and I’m like, shoot, I knew that already! Never mind, carry on, have a nice day). Over time, this grief cycle may not necessarily approach zero, but I can see the circle shrinking, stages being skipped, and soon I’ll learn to zip around the bend quicker with each new shock that comes along. I’ve already mastered with the whole peeing on the floor thing…once I learn it has happened, I can go from Zero to Acceptance in less than 30 seconds! There’s no shock or denial, anger and bargaining is more from the owners or cleaners of the floor, depression looks more like embarrassment for whomever had to witness it.
As I sat in the parking lot after a good weep and a prayer, I took a moment to acknowledge and thank my friend in Heaven. Then I collected myself and made another list of what I’ve gained and have been able to overcome, parenting skills I’ve developed, learning to appreciate the smallest of milestones, massive spiritual growth, appreciating and loving people – all people – the way God loves me, the gift of amazing teachers and therapists leading to marked improvements in The Elder’s development, and all the many blessings I have received on this side of the fence where who cares if the grass isn’t greener….I’ve got the whole spectrum!
Possibly Helpful Resources:
Feel free to explore the links in the sidebar widget
about Blogs: Settings…
The Hub once again, trying to get WordPress plugin wordbooker to place nicely with Facebook. Some curious issues though. It does connect to Jen’s Facebook profile, but the most recent status update is pulls in Dec 31 (It’s currently Aug 28). I think I may have the found the issue. Time to try it out. Fire in the hole!
