Monday, October 5, 2015



Snake Oils and Essential Oils

I have been using essential oils for a while now...As in, I got desperate with Charlotte never sleeping and flipping out and being unable to self-soothe...back about 3-4 years ago.

I have slowly upgraded to better quality oils.  I have done my homework on safe practices and what I shouldn't use on little kids.  I have read up on which ones are effective, and which ones just smell wonderful.

I would encourage you to do likewise, because just taking someone's word on extremism can be unwise.

I am a big fan of medicine.  I am a big fan of being aware that eating habits and exercise affect your health.  I am a big fan of essential oils.  I am also a big fan of using them all to make you healthy and balanced in life.

As I said, I got involved with essential oils when Charlotte would not sleep.  I got some marginal lavender oil and mixed it with water and HOSED her room down with it.  She because much more relaxed and rested willingly.  At the time, I didn't know or care if she just liked how it smelled, so she smelled more deeply, allowing her body to wind down to sleep or if it chemically affected her.

She was hyper sensitive to all smells and chemicals so this made sense.  If certain ones could turn her into a crazy woman in 2.3 seconds then it stood to reason that other external stimuli could smoothe out the nuttiness.

Over the last 3 years, I started reading up on oils.  Which could soothe, which could help kill germs in the air, which could freshen.  Eventually, I was looking more deeply.  Which could be used as antiseptic, which could help you concentrate, which could help you sleep more deeply.

About 6 months ago, I got a kit of oils and a diffuser from Young Living.  I am a terrible seller, because I can justify so many options.  I bought in mostly because I think some oils are worth the pyramid price because of the commitment to purity and the documentation, also with the kit, I basically got a diffuser for free.  Some I think are worthy of a lesser price tag that are sold from other quality options.  Some I like the mixture/ratios better in Young Living, some I prefer other brands.  I bought the kit because it had one of the more expensive oils that I wanted plus a diffuser, plus a bunch of other oils to try for basically free...and I knew I'd never try them if I had to order them separately.  I currently have Young Living, DoTerra, Plant Therapy, and Native American Nutritionals.  My favorites are Young Living and Native American Nutritionals.  I have found them effective to mediate many different issues.  They have helped Charlotte and Elise improve their coping and emotional feelings.  They have helped us fight off several viruses and they have helped us shorten the duration of several.  They have helped my girls rest more deeply.  They are helping mediate some of my ADHD symptoms.  They have helped with several of my migraine symptoms.  They smell wonderful. 

My husband is still skeptical, which is fine, it's his right.  He has said that it's all in my head...but as some of my struggles are in my head (stress, attention, migraines) then them helping in my head I figure is still a good thing.  However, he did get to witness Charlotte have a full on meltdown over spring break and the oils brought her back to sanity, such that they have received a certain measure of credence.

More importantly, they help Elise and Charlotte calm down...which, when you can barely get from place to place for them having an emotional breakdown, this is more valuable than diamonds. 

Just like medicine varies in dosage per person and gives different side effects and magnitude of those side effects because of personal chemistry, the oils are also differently effective on each person.  Elise is not impacted significantly by the oils I use for attention, but one of the calming blends is her personal silver bullet.  Amelia is very much calmed by some combinations.  Charlotte takes almost no strength to see huge changes in behavior.

If you are already a fan, I have one other thing to share...As I am carrying some of these oils around, I need a way to protect them and keep them somewhat organized.  I have been known to take them out to let a friend sniff them in a Tinkerbell lunchbox.  Which I find entertaining in a juxtaposition of wildly printed plastic and alternative natural therapies...

A friend of mine makes bags. While I know her to be a very quality seamstress, and I would have recommended her products simply on her consistency, she gave me a couple in a fun group swap, and I was shocked at the room in them.  I could get ridiculous numbers of rollers and oils in them!  GlowFromTheInside sells fun bags in prints for everyone and in a ton of different sizes, for storage or for grabbing them to keep everybody sane.  And, of course, they can keep anything in them, like pencils, crayons, make up, jewelry, rocks, or toys...which is why I always like bags!! 

If you have any fabric *NEEDS*, do message her, and she will find you something of your taste. 

If you have any oil questions, don't hesitate to message me on this blog's Facebook or email me...and I will happily get you the info you like.

Friday, October 2, 2015

Ribbons and Whatnot

I have obviously taken a very long vacation from posting.  As a short explanation, my husband decided to run for a local political seat earlier this year.  I locked up my personal Facebook page, the blog's Facebook page, and my blogs so there would be nothing that I said a human...that could be used against him.  He ran a very positive and honest campaign, which makes me very proud, but that did not stop others from choosing to do otherwise.  So I am exceedingly glad I took those precautions.  He was not chosen, but I had such a horrible taste in my mouth from the attacks, I literally had panic attacks when I thought about unlocking my security.

I have still opted to keep some security on the comments...forgive the flippancy...but "It's me, not you."

I spent 75% of my Childhood Cancer Awareness month worried for the health of someone I love...and wondering if I had breast cancer.  So I was not really in the mindset you have to be to revisit cancer.

I will be 40 in November, so I did my duty, spurred by several friends who are breast cancer survivors, and had my first mammogram.  Because I have had several bouts of mastitis while breastfeeding each of my kids, I fully expected dodgy mammogram results.  So I paid extra to have the 3D mammogram.  However, instead of the quick results they promised me, they didn't call me for almost a week and a half.  There are some results that "no news is good news"...stuff like this is less so, because it means it wasn't a quickie when I was called and told that I needed an ultrasound, I was already a smidge stressed.  However, I wasn't really worried, because I figured that they had found scar tissue from the infections.  I kind of blew it off.  But the nurse kept stressing that it wasn't "That kind of call back.  It's the kind that is no longer a diagnostic call back." to the point that I was genuinely strung out by the time I had the ultrasound scheduled.

And then, yesterday, I was informed that the spot was a cyst that was "The wrong color on the ultrasound." And that I needed to have an aspiration/needle biopsy. 

I typically have a "DON'T Google the symptoms." stance on things because you always have a tumor by the time you read all the hyperlink options.  But in this case, the nurses had gone to so much trouble to tell me how atypical this was, that I figured that the odds were bad.  Ironically, when I finally got the guts up to Google it, because, really, what's a worse WebMD outcome than cancer?  There were way more assurances that these come up cancer proportionately less...which led me to really question "Why all the medical cautioning?"  Which only left me nauseated.

This morning at about 8:00, they emptied the cyst, and it was benign and that there was no need for pathology.  So I am left with a hefty hospital bill, but a release to normal life...which looks way sparkley and brighter today.

BUT as I looked over at my friends who have fought this beast, because I wondered if I would join yet another club in the Awareness Month, I was struck at how the white washing of breast cancer is mainstream just like the glossing of childhood cancers.

And it really makes me mad.

Breast cancer awareness is not all pinks and cakes and 5Ks with balloons.  It's ugly, it's vicious, it's destructive to family life, general health, and it has long term impacts.  I know several survivors that have beat it, only to have it loop back and attack another system.  I hear all the funny games of what color bras you are wearing to bring "awareness", but it's not kosher to point out that even those who have survived and have something to put in their bras and had reconstructive surgeries have aggressive scarring and permanent damage and suffer long term effects.

It's not about the boobies, People, it's about saving lives.

Childhood cancer awareness is also not all about the beautiful, shiny bald heads on the St. Jude commercials.  It's not the beautifully written books/movies of Nicholas Sparks or John Green. 

It's about kids who have DIED.  Or those who have survived with long term losses, brain damage, and lost childhoods.  It is an ugly monster that steals what you take for granted.  It steals things that you simply don't "deserve because we live in the world we live in".  It destroys things that are hauntingly beautiful.  Things as basic as your family being together. It steals futures.

Childhood Cancer Awareness Month is always a kick in the teeth to know how resilient kids are, how their bodies fight like wild animals against cancer, but that the funding for new treatments for a cure is virtually non-existent.  It's about 4% of the cancer research allotment, and it stands to do far more good and offer more saved futures as a unit. 

For me, it doesn't matter how long it's been since Elise was on treatment.  I feel its impact regularly, but I don't despair in what was ravaged, I treasure that she was given a future.  And the kids that are still fighting don't stop when September is over.  If you ever want to pass on an over-priced coffee, there are lovely organizations that would love your dollars to make a difference for kids and their families.  Even if you missed the publicly prettied-up window.

I am posting 31 for 21 posts for Down syndrome this year on my personal Facebook page and this blog's Facebook page:  At the end of the month, I'll collect them all up and post them in a single post on here.  So do like us and follow to check and see what hits me as important to share this month...I am always just as surprised as you.

P.s.  It's good to be back, I've missed our little chats.

Wednesday, September 9, 2015


Hope tends to be either overused or underused in the special needs world. 

Either you are failing your child in some manner or another for "not believing hard enough" or you are not "taking advantage of available therapies".

OR you are a "pie-in-the-sky parent who doesn't see the reality of your child's current status".

I've been accused of both...and more.  Sometimes in the same conversation or IEP meeting.  So, go figure...

Once upon a time...several years ago, Elise and Gabriel (4 years older) were on my parents' sailboat in a bit of a gale.  Such that Gabriel, who has always been a bit of a boat baby, hunkered down in the cabin, praying that they wouldn't capsize and die.  The bizarre part, what that Elise who had always been a bit of the Safety Police, and was over-aware of every jiggle of the boat, was up on deck, hand-over-hand tightening the jib lines, her face to the wind, grinning.

It was such an odd reaction for the both of them that it was added to family lore.  And sailing was not the battle to get Elise from the dock to the boat from that point on.

This weekend, we went to a friend's house on the lake.  And Elise did her usual screech every time the dock moved more than she liked.  But she remembered riding on their motor boat, so she ensconced herself on the back of it so they couldn't take it out without taking her.  She eventually got the guts up to get herself moved over to an inner-tube, and then squawked while I tried to get her turned around so it wouldn't dump her out at every movement of the water.  All this time, she has been observing everyone out playing on kayaks.  There was one adult one that was a tandem, and two little singletons for kids.  She decided eventually that the tandem had to be tried.  So, with some significant effort, we got her on with her brother.  She thought this was so excellent that she needed to try a kid-sized one after she got back.  There were a LOT more panic-y moments getting her situated on that, but when she finally got on, she was so pleased that she actually spent the time figuring out how to work the paddle.

By the time came for her to ride on the motor-boat, she had figured out how to manage it amazingly well...only needing help with turns.  And she thanked me, and the spare dad she had borrowed, profusely for letting her play on the "Gak boat".  And now she pleads to go again periodically.

This is epic. 

I love to kayak.  I am in the process of getting one of my own.  I have been out with a friend a bunch of times.  But when I had this in my head, I saw this as never being something Elise could actually participate in, if I could even talk her onto a boat.  I was afraid that it included just way too much motor-planning.  But this weekend has given me hope that she could actually participate...and bask in it as much as me...and it opened not only kayak possibility, but the possibility of things changing in her motor status...which has been rather stagnant and depressing for the last several years, to be honest...and not on my own, but the information I have been getting from many of her therapists.

Adventures are still ahead.  And hope certainly is.

Wednesday, March 4, 2015

Brass Tacks on "End the Word"

Today is the End the Word Day. 

I have talked on this before.  It is the campaign to ask people not to use the word "retarded"...

I am going to make this really simple. I've changed my mind since last year. I don't want you to find another word.  I don't want you to use a synonym.  I want you to consider your heart. 

I have a friend who posted on how "'Special' is the new 'Retard'".  About how now, people are indeed getting away from the "R" word, and using a variant.  She concluded with "Respect Everyone".

And that really struck me as key to what I have been mulling.

If you can't use the "R" word, why do you need another word to cut and hurt?  Why do you need to find another disparaging word?  Why can't you walk away?  Why can't you use nice words with your friends?  Why do you need to tear your own worth down because of a silly mistake?

Look for the good.  Understand choices come from others' pasts.  Understand that you are human, and move forward.

If you can't say something nice, DON'T SAY ANYTHING AT ALL

Monday, January 19, 2015

The Queen's Speech

I haven't written a lot lately.  Well, that's not true.  I have several blog posts I just can't bring myself to push publish on. 

I feel like my writing is linked to what we are fighting here. 

Stuttering.  Not just a couple of words, here, mind.  Like it feels like everything. 

(the link if you are on a mobile device:

Unless she's angry and telling me off.  The stuttering gets worse when she is tired and worn out.  So even if she has an okay day at school, she is wiped when she comes home and I get it all.  All night.

I get either the above or I get "turd," "no," or anything that she things might get a rise out of me. 

Or she watches excruciatingly annoying YouTube variations of Frozen.  You know what is way worse than Elsa?  Elsa in Japanese.  In anime.

(The link if you are on a mobile device:

She is also dealing with a TON of sensory issues and tween attitude/hormone bursts.  And some days it's hard to tell if she can help the fit or she can't. 

Is it the sensory overload, is it a bad attitude, is it struggles at school, is it social anxiety, is it frustration with her own inabilities, is it that she is completely hacked off by the stuttering tying her down?

I have always been super conscientious to not give her consequences for things she cannot help.  But I have been equally conscientious to give her reasonable consequences to behaviors that are not acceptable in public or life, like all my other children. 

This whole tween/teen stuff with non-verbal peeps is the pits.  So much of it is feelings.  And if you can't express it, all of it remains bottled and it all remains there, chaffing....eating...hurting...

Also, who you are as a person, not as a parent, but your own struggles and foibles, figures in in surprising ways to kick you in the teeth.

The best thing to do with people with stuttering issues is praising success and giving tools to personally work through the catches, and then to just sit back and allow them to work through it.  If I wait her out and don't rush her, I get distracted by dust brain races off to my to do list, stories, and really random stuff...and I am fighting to stay tuned in, so I can understand her story, request, whatever.   My inability to shut up my head....well, it's worrying me...and I'm seriously considering treating my own ADHD so I can reasonably deal with her stuttering.  I have opted to treat it naturally with essential oils and coffee, but some days, it's just not enough.


I am not telling you good news.  I am not telling you hope for your future if you have a little.  I am telling you of the battle we are waging today.  A bad one.  One that keeps looping back to get us.  Stuttering and disfluencies have been a factor that we have thought we beat.  Several times.  And every time it comes back, it's more virulent, and, frankly, more depressing to deal with.

And stuttering is, in some ways, a terrifying foe.  You cannot communicate and in some ways you lose your child.  You cannot wage a focused war.  You want to bomb everything and start over, but you can't.  You want to take your kid and flee, but you can't.  You have to start with one thing and keep trying while you flail around in the cupboard of possible treatments.  None of which promise anything.

And I find myself fighting the urge to jump around like "Bertie" in The King's Speech when he discovered that he didn't stammer when he swore.  Stammering is a "Beastly Bastard" that I find heavier than the Downs. Heavier than the sensory stuff.  Heavier than even the impulses of the ADHD.

For somebody that didn't communicate any of my feelings for the better part of 30 years, I find the restriction particularly cloying and hard to deal with.  And I cannot fathom how hard it is on Elise, for whom there have never been barriers that she couldn't overcome in some slippery manner.

And so I let her watch 4.33 minutes of movies over and over when she is home....And with so many scenes that she obsesses over being battles or triumph, I daresay she is feeling the oppression, too.

(The link if you are on a mobile device: 
I've spoken of her love for Peter Pan before.  But, I will add, that just because you are a child, does not mean you don't have battles. 

And so we fight.  And sometimes, it takes strength to stand.  So we continue to.

We'll fly again, eventually.

Friday, October 3, 2014

31 for 21: Pizza Friday and Puppies

Elise loves Pizza.  Perhaps with a passion that most people cannot comprehend.

She wants it for any celebration for the rest of forever. 

Whenever I asked what people wanted to eat, it was always pizza.  If the answer was "no", it was followed by massive weeping and huge depression.

About this time last year, I discovered that if there was anything Elise liked more, it was expectations.  She loves a constant schedule.  I think this is a primary reason she likes school.  I am not a schedule person.  It does not make me happy.

BUT I don't like constant sadness, either.  So we implemented Pizza Friday.  She had a constant expectation that she would indeed get pizza, without fail on Friday, but tonight is not Friday.  She could make peace with that, Friday nights became no-brainers, and the rest of the kids thought this was marvelous.

It has encouraged us all to enable more routine, and it has made it our lives much nicer...I have even bought a planner.  *gasp*

Today, October the 3rd, 2014, marks another shocking milestone.
Today I was able to march into a regular store, with no list or angst, and purchase Elise's birthday presents.  And I know, with no reservations, that she will love them.  And play with them.
This may be a weird piece of information, but Elise doesn't really play with toys.  She likes toys, but has very few that she interacts with and takes pleasure form.  About once a year, she figures out some aspect of "play" and life improves drastically. 
She is turning 12 at the end of this month, and what has she been pining for?  A Nerf Crossbow.  For about 6 months.  I cannot wait to present it to her.
I also found this blast from my past, Puppy Surprise:

It is a pregnant puppy.  You open its Velcro tummy, and get a secret number of puppies out.  It's a little freaky, but for someone who is obsessed with matching and family, it's going to blow her mind.  And its name is Popcorn.  Another one of her favorite things.

I'll post pix of her receiving them, but for once, I am really, REALLY excited to see her reaction!  :)

As always, her birthday reminds me where she is not, compared to her peers, but, every single year, we can look back and see some major strides in some aspect of her development.  And we quite honestly party!

This year, we are PLAYING!!!