One Sick Mother

Rainbows and Grace

So I picked Grace up from Brownies today. They were running late, so rather than wait at the front door, I went into the school and peeked in the room to watch my beloved daughter at her group social activity with the typical kids.

I saw a rather extraordinarily dressed woman singing with the girls. She looked like the 70s love child of a cross-dressing Gay Pride marcher and a 5 year-old girl's glamour ideal. She had on a floaty dress made of different coloured scarves, a Rainbow shawl, a bad blond 70's wig and silver bedazzled high-heeled pumps. -actually the pumps wouldn't have been too bad but they were round-toe covered platforms. If you are going to go high, you may as well go pointy, in my opinion. And I don't like the covered platform look. I think only Gucci did it well. (But I digress)

So they sang their song and she tried to flog the kids a CD and a book. Grace took only the flyer, slung it in her backpack and seemed in a hurry to leave.  We talked on the way home:

So Grace, did you like the Rainbow Lady?"
"Not really"
"Why?"
"I don't know"
"What did she talk about?"
"About helping people and stuff"
"well, that's not bad, is it?"
"No ...but she said we all have a rainbow in our hearts and that just isn't true."

Knowing Grace as I do, I figured she wrote the Rainbow Lady off as soon as she heard that "Rainbow in our heats" bullshit (Grace is very literal and she owns a book on the Human Body -no rainbows!). After that, it didn't matter what the Rainbow Lady said, as far as Grace was concerned; Ms Rainbow could have offered a feasible solution to the economy or World peace and it woudl have fallen on the deaf ears of Grace. The Rainbow Lady had tried to bullshit Grace once and that was it. Everything she said thereafter (or therebefore!) must be rubbish.

I guess the Rainbow Lady never factored Aspies into the equation when she was writing her material.

Methinks it is time the Rainbow Ladies embraced the new Millenium.

Rules, Damn Rules and Statistics

I have been thinking about rules a lot recently. I live in a house with two ASD kids, so rules are a big part of my home life. Here are examples of some of the more colorful rules we have had in the past:

• We keep our shoes and clothes on in restaurants.

• No rocks in the house

• We don't growl at friends (or at anybody).

• We don't lick Mom

• No sniffing the Dominos man (it really freaks him out!)

• No feet on the dog

• We wear clothes and shoes when we go outside.

Most rules are good. Most rules are sensible and designed to help in some way. We don't put our feet on the dog or he might bite us. We wear shoes and clothes outside so we don't freeze to death, don't cut our feet and don't freak out the neighbors. Rules created with thought and purpose are good.

In diagnostic medicine there are a lot of good commonsense Rules. If a person arrives into the ER complaining that their knees hurt, there is no point in giving them a chest x-ray.  You know, stuff like that.

Damn Rules, however are another story. Damn rules are arbitrary and seem to have little logic or purpose. Damn Rules are rampant in diagnostic medicine.

I remember when Grace was about 9 months old, I took her to the doctor.  She was vomiting with a fever. It was my second trip to the pediatrician's that week. I had been there a few days earlier with a feverish, vomiting Joe, who was about 2½ at the time. They had tested Joe for Strep, it was positive. Antibiotics. Done.

I figured it was only a matter of time before Grace got Strep too -those guys were complete germ factories. So as soon as she threw up, I took her to the pediatrician's office.

The Pediatrician walked in to see Grace.  "What's the problem?" he asked before he was through the door.

"She has a fever and she vomited. Her brother has strep, so I thou..." He interrupted me quite brusquely "It's not strep" he said in a very finite way.  He had barely looked at her, hadn't laid a hand on her. What is this? I thought to myself Psychic Medicine?
"How do you know?" I asked, agog.
"Babies under one don't get Strep." he said, dismissively.  "It's probably a virus"
"...But  ....but her brother has Strep and she has the exact same symptoms."
"It doesn't matter. Babies under one don't get strep"

He started to examine Grace, while I pondered this statement. Finally I asked a question that was bothering me.
"How does the strep know?"
He was confused: "What?"
"How does the streptococcus bacteria know how old she is?  How does it test her age (and why does it care)?"  How can it tell the difference between an 11 month old  baby and a 12 month old one?

He looked at me for a minute. spluttered, stopped, looked at the child then asked "what does she weigh?" I told him.  He muttered something very grudging about being big for her age and tested her for Strep. And what do you know? It was positive!  He acted AMAZED.  "But babies under one don't get Strep!"  I struggled not to shout at him.

And afterwards I thought and thought about this and I figured maybe that Damn Rule  was almost true 50 or 100 years ago, when kids were smaller and less well nourished, but not today.

When I took Grace for her follow-up to be sure the Strep was gone, I saw a different doc in the practice.  "Oh! She had strep? and she is  ...what?  ...9 months old?  Wow! I wouldn't even have tested her! Babies under one don't get Strep, you know...". I indicated Grace with a flourish of my hypermobile wrist: "Exhibit A" I said with heavy irony

I think she missed the irony.

You know, it's funny, I never read the paper about the stunning case of Grace-the-nine-month-old-baby-with-Strep in any of the on-line research I have done over the years. 

Sorry. That irony just keeps coming back.

There are many rules like that in medicine. Rules which rely on arbitrary formulas and measurements without looking at changes in the trends or other factors. -Damn Rules, as I like to call them.  In our example, Grace had a sibling with Strep (which is highly contagious) and had the exact same symptoms, but these factors  were completely ignored in favor of a Damn Rule with no real logic behind it. It wasn't until I went all Mr Spock on the guy and challenged the logic that she was tested (but I am sure many mothers would not have dared to challenge the doctor, which thought scares me). I still don't know how the Streptococcus bacteria knows the weight of the child, BTW  -or why it cares!

There are many examples of Damn Rules in medicine, and I have seen many people refused treatment -i.e. hurt because of these Damn Rules (hello Hippocratic Oath?). 

Some of the Damn Rules I have encountered recently:

• A brain herniation of <5mm is not a Chiari Malformation (regardless of symptoms)
• A Small syrinx does not cause symptoms (said to a blatantly symptomatic person with a small syrinx)
  And my personal favorite:
• He makes eye contact, so he cannot be on the Autistic Spectrum.

In addition to -and conjunction with- Damn Rules, Statistics is another diagnostic tool which has absolutely no bearing on symptoms or circumstance and yet, like Damn Rules, Statistics are often taken into account and indeed used to rule stuff out before symptoms or circumstance are considered.

How many times have I been told that I can't have an illness -say Ehlers-Danlos Syndrome, because it is "rare"?  There seems to be some kind of blinders set up in the medical world, some unwritten Damn Rules that go along with Statistics. I think they read something like this:

• "Rare" is actually another word for "mythical" or "non-existent"
• Even if it exists, I, Dr. OfSickMother cannot possibly have a patient with a rare disease in my care because:

• Nothing interesting ever happens to me
• It is too scary a prospect for me to handle

The problems with this thinking -with using Statistics as a diagnostic tool at all; is that it becomes self-perpetuating. So-called "rare" disease and conditions remain undiagnosed or labeled psychosomatic because they are "rare". This causes the incidence rate for psychosomatic illness to rise in the Statistics because so many people with "rare" illnesses end up in that bin. With the rise of these (usually unqualified) psychological diagnoses in the statistics, the relative incidence of real "rare" diseases fall...  Rinse and repeat.

It's enough to make me sick. 

Oops. Too late!

Fun With Heartbeats

Oooooh yes... Fun, fun, FUN!   

Not.

I'm an awful fookin eejit sometimes.

I mean really, I wrote about pushing boundaries before and how it is a natural thing with an illness. But you can take things too far.  And I did the other day.  I had been feeling good. I was feeling confident that I was making progress. OK I had put on a few pounds recently with carbs and then water, so I decided to do something "for me".

I worked out.

Stupid, stupid, stupid, STUPID.

It was only 10 minutes on the elliptical trainer and I felt OK for a short while afterwards. Then I needed to lie down and I slept (passed out?) for about 3½ hours.

I felt like poo after I woke. And all the next day.  My heartbeat felt funny. I know that's not a technical term, but that's the only way I can describe it. It felt like it was working too hard; -beating -not too fast, but too ...hard. I was short of breath, too. So I strapped on the sports heartrate monitor (WHY I didn't put it on while exercising is beyond me!)  My resting heartrate was 54.  That's too slow. 

I spent most of that day debating with myself. Should I go to the ER, should I cut back on the Florinef, or should I try and adjust me electrolytes?  I tried cutting back on the Florinef. It didn't help the heartrate any and so I just felt seizurey on top of the nasty.

I seriously considered the ER. But I reckoned they either would poo-poo my concerns or admit me. And if they admitted me, they would probably mess with the Florinef, making me MUCH worse. 

So I researched and researched.  I eventually figured out by looking at my diet and supplements and all that other stuff, that my potassium levels had probably been decimated by that stint on the machine. I don't consume anywhere near the RDA of potassium, and the symptoms fit deficiency perfectly.

So I am slowly raising my potassium levels through food and trying to feel normal (for me) again. I think it is working.

I want to stress that I DON'T condone this kind of self-diagnosis and treatment. I know I did it myself, but it was a very calculated risk, taken with a very thorough knowledge of the symptoms of high potassium and a firm plan to get to the hospital (which is just around the corner) if I was wrong.

And I don't think I was wrong.  At least one thing I can say with certainty after all the craziness of the past few years:

I know my body.

...but not my limitations.

Yes. I'm full of contradictions today.

Two Huge Revelations

Yesterday, I finally realized something huge:  The Florinef seems to be going a long way towards controlling my seizures. I think I finally got the dosage right on Saturday. I felt good that day until almost midnight, when I had a massive seizure.  This seizure had kind of come up suddenly, with none of the usual triggers and I wondered in my head if it was the medication wearing off? 

The next day, I took the same dose and I felt good until about 3:30pm and again: I felt awful and I knew it was a prodrome. Sure enough: Two huge fits ensued.  I wondered if the medication was wearing off, and this was why I was seizing like that?

I am supposed to take this medication only once a day. However, on Monday, I thought I would try something different, when Himself was going to be home. I took the same dosage in the morning. Then at 2:30-ish I started to feel crappy again, like the med was wearing off. I took another half a pill, taking me up to the full dosage the doc had recommended.  I beavered away at the computer, hoping to get some research in before the seizure came.

It never came. I realized a while later that I was starting to feel well again.

WOW!

I mean, really: I have tried all sorts of things to stave off a seizure in the past: eating, drinking,  fasting, salt, sugar, exercise, laying still, taking anti-epileptic drugs, even Excedrin Migraine (when Migraine was the working theory). Nothing worked. NOTHING.

Until yesterday.

Now some people might say I was naughty to mess with my meds, and normally I would agree. However I searched the Internet high and low for some kind of information on Florinef or Aldosterone (the hormone which Florinef replaces) and seizures, convulsions or epilepsy. Nothing. I searched for information on Addison's disease (the closest searchable condition I could come up with that related to Aldosterone deficiency) and seizures, convulsion or  epilepsy.  Again, nothing. So I figured this situation is pretty much unprecedented. I could have called the endo or the neuro, but they wouldn't have a clue. So  I chose to listen to my body.

Sometime after 4pm, I had figured out the Florinef had definitely staved off the attack. I kept searching the Internet for possible reasons why and coming up empty again and again.

I hit bottom.

I started to lose the conviction that had kept me going thus far. I started to thank that maybe it *was* just a very elaborate placebo effect. I was starting to wonder for the first time in 2½ years if I might actually be going mad? I didn't in my heart think "mad" really explained all my symptoms. I don't suffer with anxiety, like most people with psychologically based seizures do.  But maybe I was a particularly clever and elaborate madwoman? Maybe I don't even know I was anxious (at specific times of day and after meals) and that anxiety was causing the seizure, as the "experts" (who spent less than an hour with me) have suggested?  And I didn't feel mad ...but I think people usually don't if they are truly insane. 

I was really starting to question ... everything.

Then, in the midst of my increasingly frantic searching of th Internet and questioning of myself,  I noticed a new person had commented here on OSM. At 4:32pm Tara had left a very nice comment. I wandered over to her blog (the other one) to have a little look at it.  Tara has a beautiful daughter with special needs. I  clicked on the link to Chloe's background story and read it. I froze when I read this paragraph:

"A Google search quickly made me realize that Infantile Spasms, aka I.S. or West Syndrome, is a very BIG deal. I read that 90% of babies with I.S. end up with mental retardation and they have a 60% higher mortality rate before the age of 10. The medication used to treat it, ACTH, cost $20,000 a vial..."

Hang on: ACTH isn't a seizure medication! I know them all. In fact, from all the research I had done in just the past few days, I recognized the name ACTH immediately. It is the hormone the body produces to stimulate the adrenal glands, which in turn produce cortisol and...

you guessed it: Aldosterone. 

The stuff I am virtually missing that the Florinef is replacing.

WOW!  Talk about a bombshell!  I was stunned!

OK ACTH does not directly produce aldosterone, but that close relationship is more than a coincidence. it has to be!

I did some searching on West Syndrome. West Syndrome -by it's very existence, proves that there can be a link between seizures and adrenal hormones. I missed it because I wasn't searching on ACTH.  Unfortunately, when I researched a little further, I realized that this particular therapy has only been researched in young children.  Not in adults at all.

I guess "they" don't think a hormone deficiency can cause seizures in adults. Therefore I suppose all the other adults who might have this have been chucked into the "psychosomatic" bin by their doctors.

How glad am I that I refused to be placed in that bin?  And how glad am I that Tara happened by this blog, virtually in the very hour that I was starting to give up hope, and she (totally inadvertently) provided me with the clue that inspired me to keep going?

Very glad. Wordlessly glad.

Now, I don't know if this Florinef thing is the ultimate answer for me. For one thing, it seems to have a HUGE rebound effect. When it wears off, I start to feel unwell pretty quickly. I get the weird "sunglasses" headache, my foot goes numb and I start to feel awful. The seizures, when they hit, are WAY worse than my regular seizures. They last longer and are more intense.

And an aldosterone imbalance doesn't seem to explain a lot of other stuff, either: It does explain the meds reactions.  But it might explain some of the vitamin deficiencies. But I feel this is a HUGE step in the right direction. I guess I need to do a lot more research and speak to more doctors.   I have a few key appointments lined up in the next few weeks.

Interesting stuff, eh?  I will keep you guys updated.

Autism Moms

This is my shorthand for "mothers of kids on the Autistic Spectrum". I don't mean mothers who are themselves on the Autistic spectrum, although I am sure there are some who meet either or both descriptions.

A mom of a child with Down Syndrome mentioned recently that she thought in some ways it is easier to parent a kid with Down's than a kid with Autism, because the diagnosis is never questioned. Them kids get help from day one, no need to fight with pediatricians and various 'ologists"; no fear of being labeled hysterical or worse: Munchausens by proxy.

Also -something that struck me later, there is no ambiguity in finding local families.  You run into a family with a DS kid, and there is no question that the kids has DS and that the family knows about it.  Now I am sure -I KNOW there are drawbacks to having (being) a child with a readily distinguishable difference,  as many foolish people must apply outmoded preconceptions to their interactions (or lack thereof) with the child. But my post today is not about defining differences.

It is about finding our peers.

If you have a kid (or two) with an invisible difference, such as Autism, ADHD, NVLD or countless other  diagnoses, you often feel very isolated. Especially if that child has social or behavioral issues.  They look just like any other kids, so their differences are not readily identifiable. Because of this, they often end up labeled a "brat" and you get labeled a bad parent. The only other people who truly get it are ther people who have lived it. Other Autism (or whatever) Moms.

Finding them is the trick.

I often see kids when I am out-and-about locally, in the library, or the supermarket, bookstore and something about that kid may make me wonder if they might be on the Spectrum. There may be a look or a way of speaking, that would mean little to a bystander, but to me; -with my enhanced Autism Radar, it might mean Something More.  I have had to restrain myself from saying something to the mom or Grandma, because it Just Isn't Done for a stranger to suggest a child might be on the sprectum -even if it seem obvious (to me). The parent (or grandma) may not know, or may be in severe denial. Or the child could be mis- (or correctly) diagnosed with something else (yes, it still happens).  But sometimes I wish I could say something, -not just for my kids, who may make a new friend, but for myself, who could use one. Because once you get past "hello", there is so much to talk about.

As I mentioned before, my kids attend a social skills group for Spectrum kids. We didn't know any of the other families when the group began. Most of the other parents drop off and don't stick around. However, just last week, a few of us us parents ended up waiting together and we got to talking. It's funny the shorthand that can develop in a very short time because you don't have to explain everything: "What his obsession? ...Oh we didn't have that one, but we had..."  and it goes on.

Another great thing about Autism parents: They are terrific source of information about local resources and ...stuff, from the best karate school for "our" kids, to the neurologist you should avoid like the plague.

Now, there are great resources online, and I am a big believer in online support groups (I should! I lead one.) But real-life human interaction is equally -if not more- important.

When you do find other Autism or special needs moms locally, the experience can be very validating. I belong to our local SEPTA (Special Ed PTA).  Outside the main SEPTA meetings, which are big and cold and formal, there is a parents support group which meets in someone's house that is small and warm and friendly. 

And therapeutic.

I vividly remember at one of our first meetings, one woman; -we'll call her Stacy,  was talking about her child, who had some pretty intense behavior stuff going on at the time: "You know when your kid is climbing the bookcases after going through the house like a tornado for three hours and you..." About three of us nodded. Yep. We knew. She stopped mid-sentence, stunned, and then got a bit misty-eyed. She swallowed hard. "...I just realized, I have said stuff like that so many times, and nobody  ...NOBODY ever nodded before."  It was a big moment of realization for her and for several of us. The woman next to Stacy made as if to place her hand Stacy's shoulder, then withdrew it. I knew why. One more gesture of understanding and Stacy would probably have lost her composure entirely.

She wouldn't have been the only one.

5 Minutes for One Sick Mother

The excellent site, 5 minutes for Special Needs has posted an interview with yours truly. -and a rare photo of OSM. Here is the link. 

Here is the interview in full. My version is a little longer. I posted it  below, incase you are interested in more than just the juicy parts ;)

Tell me a little about yourself and your family.

I am 41 years old and originally from Ireland. I met my Scottish husband in London and we moved to New York City in the early 90s. Our children were both born here. Joe is 10 and has High Functioning Autism. Grace is 8 and has (we think) Asperger’s Syndrome –she has been a tricky one to quantify.We now live in the NYC commuter belt in a town which –coincidentally, has an excellent Special Education record.

You blog about your life with chronic illness. How has this impacted your parenting?

There has been both good and bad. The good: I have been home fulltime, and my children’s teachers and therapists have all reported that this has had a positive effect on the children’s performance in school (sorry working mothers, but they did). I am much more involved in their daily lives now, and we do a lot together. I taught Grace to knit and sew, and Joe is teaching me all about Bakugan (his obsession) and is plotting my demise in Scrabble.

However there is a lot that I now cannot do. We used to do a lot as a family: go to the Zoo, the beach, daytrips, longer trips. These activities have been reduced significantly due to my limitations (mobility, fatigue, seizures) and the financial limitations we now have with a single income and a disabled Mom.

 

Tell me more your children’s disabilities.  Did you know when they were born that they had disabilities?

They were born perfect. They are still perfect. I just changed my definition of perfect.

If not, how did you feel when you discovered it?

Joe is the oldest and I thought I dealt with it pretty well. I sprang into action to get services, schools, therapists set up. All was OK for a few months. Then one day I was driving home and a Moby song came on, with a line about “troubles with God” and I started driving down the expressway like a crazywoman, looking for a break in the divide so I could drive into oncoming traffic. I got a grip on myself after a while, and sought counseling the next day.

The therapist said my reaction was not unusual. That I had gone into overdrive to try and “fix” things for Joe. However, by busying myself, I had not actually given myself a chance to deal with my feelings about it. Then after things settled down a bit, those bottled-up feelings hit me like a brick that day on the Expressway. I stayed in therapy for a bit and it did help.

You blog a lot about your children’s issues, and that is so valuable to me and I’m sure, to others that read your blog. How did you go about making the decision to blog about them?

It was a natural progression, I suppose. A lot of my blogging is about medical issues (mostly my own) and medical advocacy. However, I cut my advocacy “teeth” dealing with doctors and school systems on behalf of my children (I have a lot to thank them for). I thought carefully about including posts about them in the blog. It really started because they have one of the same medical conditions that I have (it’s genetic). And once I included that, well, the Autism and other stuff came in too. I am aware there can be pitfalls in this scenario. I do try to blog about them in a loving manner and to portray them as real people with real …everything!  I don’t want to be one of those bloggers who moan about how awful life with Autism is, OK their life with Autism may be horrible,but mine isn’t! Autism has not been the worst thing Fate has thrown at me. Not by a long shot…

What do you personally get out of blogging about them and their issues?

I get to celebrate! I think this is one of the first posts I wrote specifically about special needs parenting:

I feel that –right now- they are both in good places. They are 8 and 10 and doing well in school and in general. Things were much harder when they were little and will probably be harder again when they are teens. I want to chronicle this time now, for others with younger kids, and for myself in a few years time, when I am up to my armpits in problems. I can look back and remember that this parenting business is a cycle.

I also get to process my thoughts. I work out my thoughts by writing about them. I know I could just write and store them on the hard drive. I tried that, but it really isn’t the same discipline at all.

How have your children’s disabilities affected you as a person and as a mother?

I feel that have made me a better person and mother. They have made me much more aware and less judgemental. I was an uppity cow when I thought they were “perfect”. I am much more real now. I have more patience now for them and for other people.

What do you wish you had done differently?

I wish I had followed my instinct and listened less to the well-meaning (but wrong) family members, doctors, and friends who gave advice like “let him cry it out” (he couldn’t) and “He’ll eat when he’s hungry” (No. He won’t. He doesn’t know that feeling is hunger). Eventually I got sense, went online, found a bunch of moms like me and started comparing notes…

What did you do right?

I got sense, went online, found a bunch of moms like me and started comparing notes…

What do you want other parents to know?

1. Follow your instinct, but not blindly (see #2)
2. Do your research. Say you are searching for a suitable school placement for your child: Visit all available options, spend some time at each one and imagine your child in that setting. If that thought makes you want to hurl, then we are back to #1. Following your (literal) gut instinct, cross that school off the list and check the next available option… Rinse and repeat.
3. Don’t compare your child to typical children. Compare your child to him (her) self 3, 6, 12 months ago. That way you will really see and appreciate the progress, instead of lamenting the fact that (s)he isn’t typical.

 

Has your own illness and disability given you any insight into your children’s issue

I was actually diagnosed with ADHD before I got sick, so yes! I have good insight into a lot of their issues.

But seriously: I used to be very much a career person –very goal orientated; -looking towards the next …everything: The next vacation, the next house then next job, The next Big Thing. I didn’t spend very much time in the here and now. Being sick has given me a much greater appreciation for the present. I spend much more time just hanging out with my kids now, instead of trying to prepare them for something.

Is there anything else you would like to share?

When Joe was first diagnosed I was “warned” by the professionals that he may never talk, that he may never learn to read or write and would probably never attend a regular school. Now, I am sure these people were trying to help in their own way to ‘prepare’ me for he worst… Which. Never. Happened!

Yes, Joe was in Special Ed for a long time. Over time he made huge progress. He is 10 now and most people who meet him casually –including a psychologist- are shocked to hear of his diagnosis (OK give him some time and they usually see something). He can hold a conversation, he is on Book 3 of Harry Potter and he is in a regular class in a regular school.

I think the moral of this story (so far) is to keep advocating and never give up hope. “They” are not always right!

Blogging on Sexuality

There was a call put out to blog about sexuality and disabilities by Dave Hingsburger. The plan is to write on the subject on Feburary 14, which I think is a great idea.  So I'm in.

Here is a link to Dave's post on the subject (he is way more eloquent than I on this topic, so easier just to link).

I have agreed to join the effort and I plan to write a post on the subject. In addition to this, I am willing to host a guest writer here on OSM. So if you are a wannabe blogger without a blog, and you would like to take up this subject, please contact me. There is an e-mail link on the left.

Fish

"Grace! Look at the time and you're not dressed yet!  Hurry up! You'll be late for school!"

"Sorry Mom. I was talking to the fish."

"Oh. And what did the fish say?"

"I don't know!             

                                 ...He was talking French."

Hmmmm. And they say Aspies have no imagination...  'They' should spend more time in my house. 

Emergent Advocates

"Mom, Grace cracked three bones"

I tell you, them's words guaranteed to get the sickest mother off her arse and up the stairs fast. Their best competitor was one morning at 7am when Joe was about 5 years old: "Mom the toaster won't pop". I moved faster that day (lucky I always unplug small appliances so no harm done). But that was before I was sick. Plus I was going down the stairs on that occasion, not up.

Either way, I got to Grace quickly. They had been horse-playing in my room. She was lying on the bed, with a pillow under her neck, calm; -not crying, but clearly hurting and a bit scared.  So far so good.  I always ask open-ended questions in these situations:
"What happened?"
"We were playing, and Joe pushed my head back and my neck cracked three times" and she made a rachety noise."  OK: hurt neck not good, but that was better news than expected. I had heard "three cracked bones" and was expecting at least one broken limb.

Grace indicated the middle three vertebrae in her neck. We did a gentle Mom assessment, I decided she didn't need the emergency Pediatrician (who is sick of the sight of us), so I took her downstairs to get some rest and spoiling. That did the trick. She was fine later.

Tonight, I got to thinking how well both she and Joe had handled the situation. I have been teaching them about the stretchiness and resultant risks that come with Ehlers-Danlos syndrome. Before last night, I had no idea if it was really sinking in. However, they both handled themselves very well. As soon as Grace said something was wrong (or maybe Joe heard it crack -not sure), they stopped. They stayed calm and did exactly the right thing to help Grace. There was no shouting or accusations. I'm sure luck played a certain role there; -it would have been different had one of them been hurt in a fight, rather than a game. but I'm grateful  for the luck.

And so I realized that my efforts to teach them about EDS and self-advocacy for it are starting to bear some fruit. We have a ways to go, but that's OK. They are still young and there is time.

..and I still have a bigger hill to climb: Autism self-advocacy.

But not today. I will climb hills tomorow. Today I am taking some time to be proud of them both.

Pushing Boundaries

This is  phrase you hear a lot as a parent: "Oh he's just pushing boundaries. He is trying to see what he can get away with".  And often it is true. But sometimes it is something else. Like Autism.

This is not a parenting post. This is a me post.  Again. Sorry, but it's my blog and I'll self-indulge if I want to.

So yeah. I started this Florinef thing less than a week ago in an attempt to address me low aldosterone issue. Florinef is basically a synthetic form of the hormone, so it should be the right tool for the job, right?  I thought so too.

But I have been very up-and-down since starting this medication. Now, it's not all the Florinef's fault. Mostly it is my own fault. First off, me and my short-term memory screwed up.  I was told to start on a half a pill taken in the morning, and I started on one pill taken at night (Why I don't write this stuff down is beyond me. OK I expected it to be on the pill bottle and it wasn't. Lesson learned.)  Ugh! Can you say INSOMNIA? And thirst? And a few other things (headache)?  So I called the doc and got that sorted out. I waited 36 hours between doses and took a half a pill in the morning. I was OK. However, the NEXT morning (yesterday) I was very NOT OK.  Very, very not OK.  As in almost went to the ER not OK. And that lasted pretty much all day.

I think this stuff has a long half-life. 

And now -per doctor's orders- I am up to a full pill in the morning. I guess I should wait till tomorrow to see how I feel on that.

Yes, I should wait.

But I didn't wait.  I was pushing boundaries today; -even after the day I had yesterday. I ate breakfast just to see what would happen. Would I have a seizure? Woudl I fall asleep uncontrollably?

Now, yesterday I ate breakfast and was effectively felled for the rest of the day. And it is the definition of madness to do the same thing and expect  a different result, right? But I did it anyway and GOT a different result. I ate breakfast and I felt OK. Result!

And if that weren't enough, I decided to push ANOTHER boundary. I ate lunch. I was a little thirsty (very thirsty is much more common), a little salt-cravy, but nothing major. No seizure.

Wow.

I realized I was really pushing my luck so I stopped experimenting for today.

And then I got to thinking about pushing boundaries: When you are sick, you push boundaries all the time. Every day, you push to see if you can still do X or still not do Y. And if you find it s a "good" day and you can maybe do both X and Y, you don't settle for that. You push harder. You go for the next thing (which I assume is Z!), trying to find the limitations of your limitations for that day, because they often change. And that's one of the most frustrating things about this whole illness business:

The inconsistency.

Because if every day was a known quantity, like it usually is for unsick people, you can plan. You will know the parameters to set, and you can go with those.

...and just realized I have just come full circle back to my "commitments" post.

Time to stop!