Thursday, October 15, 2015

Trouble Shooting Puberty

This particular post will be a little vague to protect Elise from embarrassment in the future, but I felt like the general specifics needed to be shared due to some surprised exclamations I received lately when spontaneously discussing it naturally with other parents of kids with varying disabilities.

Puberty is a giant war against crazy.  Seriously.  Add incomprehension and sensory issues in the pot and PTSD is unavoidable.  Truly, and NOT being disrespectful to veterans.

My personality default is to trouble shoot.  To the detriment of friendships at times...and to the redemption of relationships sometimes...go figure.  Parenting is a humongous exercise in trouble shooting and sometimes getting it right and sometimes getting it wrong, and a WHOLE lot of prayer.

Puberty was weird enough my first go round, with a typical son.  When faced with my darkest fear, a GIRL...well...I did what I always do...I made lists in my head of how I would handle things.  Then revamped them...over and over and nauseam.

When it became clear that Elise was going to go into it with a lowered mental age, limited communication, and raging sensory issues, I decided that I was going to handle it with as little stress as possible.  To do that, I decided that nothing could start as a time duress situation.  I was going to have to ease into everything slowly and WAAAAAAAY early, so I didn't happen into any surprises without wiggle room.

So, when she got all flippy dippy about her leg hairs in her leggings a couple of years ago, I started shaving her legs about once a week to week and a half, with a Schick Intuition.  No risk to cut herself, no shaving cream sensory gags (which I tried about 3 weeks ago, and she fell completely apart), and no pressure.  It was all on her terms.  Now that it is obvious when she needs to, its already an established routine and it's not a big deal to up the frequency a bit.

I handled the bra transition the same way.  I started letting her wear my exercise bras and the super stretchy sleep bras for fun.  Then I had her wear them to school once or twice a week, and then everyday.  And, again, now that it is no longer negotiable for modesty, she loves them and they are an established routine.

Deodorant, even.  I offered it to her when she was watching me get ready a few times, and she giggled and gagged.  Then I started asking her to put it on after a bath about once a week.  We are up to every bath, now, and she rarely needs it...but it is already established, with a scent that she loves, and we are poised, ready as soon as it becomes a daily non-negotiable.

Elise will be 13 at the end of this month and the most stereotypical aspect of puberty is looming, her period.  I mentioned how thankful I was for Willow being in heat for taking away the panic at its discovery last year. It will be any time now, so I have also been very proactive in trouble shooting for that rather huge adjustment.  I have fully anticipated that she will not handle it well, so I wrote into her IEP last year that when she starts, she will stay home that week.  My stance on that is "I don't hate anyone enough to make them deal with that." 

I have been trying to figure out how I was going to mediate that week for about a year.  Pads are dodgey and hot and bunchy for a person with typical sensory thresholds...and trying to face that with someone who loses her mind at seams in her socks and still gags watching anyone put on chapstick...well,it is daunting at best.  So, I have been trying to sort my way around that for quite some time.  I decided one day at the grocery that Poise incontinence unders would be a stellar option.  Nothing independently problematic.  TA-DA.  Except that they are hot and big.  Oh, well.  And then I got a advertisement in my Facebook feed thanks to my natural food "Like"s for THINX underwear.  But as lovely an idea as they are, they don't make the kind of unders Elise prefers AND they cost a FORTUNE.  And a few months later, I accidentally bumped into cloth menstrual pads.  They can be made in any length, shape, or fabric.  I messaged a very lovely lady on Etsy with ALL of my questions.  And not only did Denelle answer them, she sent a couple of pads for Elise to try and use to decide on her favorite fabrics.  Elise LOVES them, unlike the disposable one I made her try as well...which she gagged and retched and whined about.  And so, I have a nice little stash of pads that she wears around the house periodically...and which she brags about to her sisters who are now desperately jealous.  I can confidently say that we got all the transition of technical crazy out of the way, and we can deal with the normal, hormonal crazy head on.  While you may not be as comfortable as me, since I opted to cloth diaper my two youngest...I just share this because I know that most people don't realize there are other options out there...And I know how loathe I was to realize that I wasn't going to get out of this transition, and so I needed to act in a manner that would make it all easier on all of us.

If you have any questions on any of this, as usual, feel free to message me or email me, and I will answer anything that I can.

The time I called a doctor out and did him a favor.

I've corrected people on more positive language toward people with disabilities.  I've kept my mouth shut on a few occasions so I wouldn't end up needing bail.  I've wished I said something when I didn't...aaaand I've wished I'd kept silent when I didn't.

Over all, I try to listen to people's hearts and respond in a manner equal to what I think they are going to hear.  Abusing someone will not change hearts or encourage friendships.

I know that doctors are most under scrutiny by parents of kids with disabilities.  Which, to some degree I agree with, as they have access to the most forward information of successes.  But in another, I feel like their very profession encourages grouping needs under headings.  When they see a child with a single disability, they see the flow chart that comes from that definition.  When you see a child, you should see the child first, and the disability only as an outflowing of how you will need to alter or at least understand any changes to your communication and relationship.  When you go to the doctor, you WANT them to see the impact and consequences of that defining diagnosis...

However, I've seen doctors that have been crucified for the off the cuff remark, "Most Downs kids"...They have been black balled by entire communities and warned off by EVERYONE.

Person First Language, simply asks that you use semantics to underscore a person's individual value without any diagnosis.  For example:  Elise is a girl.  Elise is a girl with Down syndrome.  Elise is not Downs.  She is not That Downs girl.  Do you see?  Do you feel the value and respect difference?

Summary:  Elise, as I have said, is having some originating problem that is damaging her.  She is completely exhausted...sleeping to excess and struggling to cope with life as a consequence.  My first address came at the pediatrician, to make sure I wasn't missing a virus or infection or allergy.  Second, I requested a blood draw, a CBC with differentials, and a thyroid rule out cancer relapse or her thyroid crashing because of puberty and hormones.  This week we went to the cardiologist to rule out heart damage from the chemo or some kind of damage/tearing due to her congenital heart defects that were repaired at 3.5 months.  So far, we have no answers.  Frankly, this is good, because other than a virus or thyroid, the responses would have been gargantuan and dangerous. I am still treating her asthma, and we have an appointment in a few weeks.

ANYWAY, at the cardiology appointment, we got a doctor doing his cardiology fellowship.  He looked about 15, with the long, foofy, Bieber hair, and freckles.  The words "darling baby boy" should not come to mind when you are at the specialist for your child's medical conundrum...yeah.  But he heard my concerns and discussed with me back and forth like I was a peer.  (This is lovely, not all cardiologists have this kind of respectful manner!)  Some of his advice was put on the back burner, but some was put into my current medical pot to stir about.  At one point, he stumbled onto the generalization, "Many Downs kids".  At the time, we had already established a positive back and forth.  He had already been respectful to me, to Elise and her history, and given genuine input to the questions we are dealing with.  I heard it as it was meant.  I heard his compassionate heart, his knowledgeability of our situation, and his insight into possibilities.

After I got home, I realized that keeping silent had done HIM a disservice.  He is in training for a specialty that will be involved with a high number of kids with disabilities.  By letting that slide, I was putting him up on the chopping block for his heart and knowledge not to be heard by not using person-first language.  So I called the office back, and asked how I should get into contact with him over a concern.  Through a long chain, I ended up sharing this information with what felt like half of the office...and eventually he, himself called me back.  And I got to share with him my regret at not saying anything.  That I was not calling for me or my child, but that I was appreciating HIS specialty and learning process, by sharing with him MY specialty.  And he responded like a champ.  He heard me, defended his ignorance with what he MEANT to say, and graciously accepted the criticism AND education.  I am confident that he will be more conscientious in the future, and I hope he will tell his fellowship peers and anyone who trains under him in the future.  I am also rather grateful that I was late in my response, as I inadvertently educated about 4-5 other people in that office as well.

Step outside of your world and your comfort zone with confidence in your own unique skill set, and you will witness the changes.

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