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:  https://www.youtube.com/watch?v=qvWRf4_ydCw)
 

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:  https://www.youtube.com/watch?v=BM1md3oYb8M)

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 motes...my 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.

So.

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:  https://www.youtube.com/watch?v=-wX6_qCCnPc) 
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!!!

Thursday, October 2, 2014

31 for 21: Angels

I have totally hit this one a thousand times.  I am sure I will hit it again another thousand...

If I hear "Oh, you have a child with Down Syndrome?  They are SUCH angels!!!"  again.....

Well, I'll sigh and tell them my kid is just like theirs...she rolls her eyes at me, she ignores me, she talks back to me, she snitches food out of the pantry and lies about it...pretty standard for any 11/12 year old...  Not really that much of an ANGEL.

But I do have to bring to the fore a thought I had yesterday...When I was thinking about their drive to live their lives like everyone else, I am reminded that they also tend to celebrate...a lot.  Which is, I think, why people think that they are such angels...  Which made me wonder why they seem take the lion's share of celebrating?  I think it comes back to my commentary yesterday, on the needfulness of trying harder than the average bear to succeed in their plans for life?  I think the world thinks they are angels because they are triumphing more, because they are more aware of their goals, because they have to work harder and have more pressure than most.

Pro soccer players or those at the World Cup, for example.  They play the same game as my 8 year old niece.  The plays are almost identical.  The goal, certainly is.  To win.  But their celebrations... just...wow.  I cannot say in all the years of watching soccer games in high school or watching my own kids, have I seen this: 

 
And my sister-in-law hasn't posted any pictures of my niece like this:
 



I propose that the celebrations that almost all the people I know with Down Syndrome indulge in, may not come from an angelic sense, nor from a child-like comprehension, as much as an exaltation of success or inclusion...against a hard fought battle...after a long, excruciating, physically demanding, and soul-sapping battle.

They might just be reveling in victory. 

Which only earns them angelic status, if you want to go the flaming sword route...which, I wonder if it gives you as much pause, as me?

Wednesday, October 1, 2014

31 for 21: Awareness is a stupid word.

Awareness is a stupid word.

There, I said it.  This is my annual blog challenge, of making a post every day in honor of October being Down Syndrome Awareness Month. 

I know this is silly, since I just promoted Childhood Cancer Awareness Month.  But it's a little different, stay with me...

Some awareness months make more sense.  Like:  "Hey, it's important to make sure you are aware of how your body works, so you can make sure you aren't broken."  Breast cancer, heart attacks, prostate cancer...stuff like that.  Also, awareness that promotes being involved to help research funding, that is reasonable.

Others are dumb.  "Hey, something like this exists outside of you and your circles of 'normal'."  Most people already know that.  You know how I know?  Because my kid gets crooked looks whenever we go out.  Anywhere.  People are darn sure aware she is different.  They may or may not know why, and the medical jargon of what causes her to be different is almost worthless at changing perception.  That eliminates only those who think they might catch her different-ness.

I am also aware that I am not 5.  I cannot catch being 5.  I understand what causes being 5.  I understand that being 5 is different than being 38. 

So.  Big whoop.

I confess, I am spoiling for a fight, a little, this year.  I am done begging for you accept that my gal exists and I am proud of it.  I am requesting that you choose to understand, and better your life for the knowledge.

If we did say, Down Syndrome Celebration Month, or Down Syndrome Appreciation Month, I think I'd be more excited.

Being aware that somebody is 5, is different that appreciating what it is to be 5 and the magic that inviting a 5 year old to share their perspective in your life.  5 year olds can play with abandon.  They don't care what people think.  They can create anything, they suffer no barriers of why something could not work.  They get excited by things that you take for granted.  They get ecstatic about things that annoy you.  They aspire to do the fantastic.  Their imagination is limitless.  They are lucky.  You should aspire to incorporate their "joie de vivre" into your dumb, boring, "adult" life.

Being with a 5 year old invites their perspectives to unravel your barriers, to grow you past others' strictures on you, and to reactivate your imagination.  It's terribly cool.  And you are reminded what you valued when you were 5.  You are refreshed.  (After you sleep off being tired from growing and changing so much, so fast, of course.)

Well.  Guess what?  Being with someone who has Down Syndrome can regenerate things in you, too.  They are awesome.  They are remarkably like other nice, boringly normal people. 

Because of all the medical jargon, they have to fight a little harder for "normal" and it may take a little longer, but they can achieve what you can.  But because the achievements in their lives were a little more like a Spartan Run, instead of a rolling walk through a meadow, their triumph is palpable. 

Because their training for the Spartan Run of life was more rigorous, they may be more focused and aggressive and (dare I say it?) stubborn.  They are also people.  Tired, pushed, and aware.  And they want to achieve what you do. 

Guess what?  You need to take this October to understand their training, their battle, and swear to come along side and cheer.  And sign on as training partners.  Offer experiential advice.  Offer support.  Offer water. And see the mud in their lives as a sign of their mammoth achievement, not as a sign that you are better or different.  See it as a sign that you should give your respect.  Offer camaraderie, not pity.  They don't need that any more than a rock in their shoe.  If all you are going to do is stick rocks in their socks and put obstacles in their way, get out.  And know this, when they overcome your barriers, which they will, you won't be making them look bad, you will look small and selfish, and they will look triumphant.

So.  Forget awareness.  Sign on for appreciation or celebration.  Or accept that your life will be the less for not "accepting" them.

Tuesday, September 30, 2014

Childhood Cancer Wrap Up

I was a little brutal this month.






Usually I tend to focus on Elise's journey with Cancer.  I dwell on her treatment, the people who blessed us, her miracle and the impact that it has had on all of us.
http://superdownsy.blogspot.com/2013/09/cancer-thoughts.html







Last year, I listed names.







This month, I shared photos of our friends that lost the battle. 







Lost.







These are people who are in my periphery of thoughts often.  At least once a month, usually more.  And not as a passing thought, but really dwelling on them.







I know their parents must have them in their periphery on a constant basis.







Children are the most resilient beings.  And not just in life, but medically.  They bounce back with truly awe-inspiring magnificence.  You can ask any medical professional, in any specialty.

If they had anywhere near the money spent on research that adults receive, I am sure that there would be breaking discoveries on a nearly constant basis.







Out of all the federal/public funding in cancer research, less than 4% is spent on children's cancers.  Out of ever $100, only $4 goes to kids.  That is paltry.  And that is ALL forms of children's cancers...tumors, leukemia, genetic forms, brain cancer...you name it...






You can google graphs, the survival rates have come up with increased funding.  They come up when they have people believe in them enough to say, we know you can find answers.  We will help you.  That's what your $5 says when you donate to St. Jude while you are Christmas shopping. When you send $10 to AFLAC or Cure Childhood Cancer, you are standing shoulder to shoulder against every parent's darkest fear...and you are fighting.  Earnestly.







Do our kids not deserve a fight that is armed with the latest information?  Do they not deserve weapons that work against this monster?







Would you go into battle with last year's information? 






And yet, pediatric cancer patients do, daily.







Fund them.  Find a chidlhood specific group, check on their financials, and donate.  If you gave like the goofy ALS ice bucket challenge, you could give children full lives.  And that was a social experiment whim.  Imagine if you engaged and fought with them?







They could go into adulthood, warriors.  They would be the ultimate survivors.  Their families wouldn't have to listen to the what-ifs in the back of their minds...they would know who they would turn out to be.  They would have the ultimate purpose: living life and impacting others.






My Elise is a survivor.  She won her battle with 10 patients on her protocol.  That means that it was BRAND NEW INFORMATION.  But that was also 10 years ago.  And I believe that is still the standard treatment protocol.  It's working, mind you.  We can say 10 years later, that she is still free from relapse or secondary cancers. 


We have another friend that won.  Her name is Ashlyn.  She is a tiny little thing with a soul of a Navy Seal.  She won.  Thanks to random Christmas donations.  Or people like me that have too long a list of those that Cancer took from their parents...and want it to lose, every single battle from now to eternity.


You can make that happen. 


Choose a reputable group.  St. JudeCure Childhood Cancer.  Your local childhood cancer chapter.  Beat it down.  Send it your coffee money once a month to them.  I don't care how small.  If everybody did it half the year, or when they remembered, you'd outspend the government.  In the BEST WAY POSSIBLE!!!











Thursday, August 14, 2014

Talk to Me

Yesterday, Elise had her six month assessment in her outside-of-the-school Speech Therapy.  I always dread assessments these days.  I mean, I don't care as much as I used to.  It used to make me sick how far behind her peers she was.  The gap just kept yawning.  But I like to see improvements, and those have been snail slow and miniscule.  My only comfort has been that we were still moving forward.
 
 

 
But Yesterday, People!!
 

Elise has improved in Auditory Comprehension by 5 months in the last 6. I don't think we've had an improvement this big EVER. I mean, do the math for pity sake.  Elise is 11 years 10 months, and as you can see on the paper, she stands in the 2-3 year range. 

In case you haven't read a million of these assessment papers like me, in Auditory Comprehension, she moved from 3 years/6months to 3 years/11 months.  Practically bang on the money!!  This means that she is improving in what she understands when she is told something.

She only progressed from 2 years/8 months to 2 years/10 months in expressive speech, but it was still movement.  Also, her speech therapist confided that most of the cut offs were BARELY missed.  You progress by blocks of 3 questions, and if you miss the 3rd question, even if you get 2 correct, you don't move up to the next level.  So, Kathleen told me that there were several blocks that she missed by one, only, so her progression may be impressive next time, too.

I've been pleasantly encouraged that Elise has been improving in her speech and enunciations.  I hear the change, and far more importantly, I see others understand her much better.  And here we have legal proof, that her verbal prowess is not all in my head!! And it means if it's there in her comprehension, it's all up in her head, which means it will eventually make it out in Expressive Communication....someday.

I have asked several of my friends with older kids with Down Syndrome about their speech progression.  They have encouraged me a thousand million times over the years.  There are many kids with DS that progress with their peers, with a few enunciation issues.  There are some that start slow, but catch on quickly as therapy and peers move in their lives.  There are some that take their sweet time and really come into their speech in middle school and high school.  It appears that Elise has decided to follow that last path.  But that peace for me is that there is still significant hope that she will continue to really grow before adulthood...and she won't be like previous generations where they stagnate due to lack of involvement in their world.  Elise would never stand for that anyway.  Being low in speech has never discouraged her from chatting up people out in public.

I have to take this moment to say that online social media has been the best thing in the world for the special needs parents.  You have more access to information and to veteran parents than ever before.

Recently, I have even gotten some information concerning Elise's fine and gross motor plateau.  I am girding myself with information in preparation for entrance into middle school.  And I'm starting to look forward to outside OT and PT for her particular support. 

When Charlotte (my youngest) took her sweet time to potty train, I had several mamas giggle and say, "Well, I've never seen anyone in Kindergarten in diapers."  And I was encouraged.  When I have a conversation with a veteran mama of a young adult with Down Syndrome, and she keyboard giggles and says, "All the adults with Down Syndrome I know, can button their pants and tie their shoes and talk to friends."  Well, frankly, it has the same heartening effect. 

And so, we Keep Moving Forward.


 
(credit)





Bizarre Blessing

This is another TMI post.  Probably.  But it is also one that is where I'm at.

Willow is a girl dog.  My first EVER.  I have had dogs, but only ever boys.  Boys, you either fix or you don't.  And unless there are nubile girl dogs around, it really doesn't matter much.  Especially if your dog gets car sick or you keep them at home. 

Our vet wanted Willow to go through one heat before her spay.  (Which was not even a discussion, if Willow is going out with us into the community, she MUST be fixed.)  Something about it being healthier...which I never could figure out why, something about all her hormones being happy systemically.  Whatever.  They are the experts.

I didn't really give it much thought.  I somehow thought it would be a few days kind of thing, tops.  SO wrong.  It's more like 2 weeks in larger dogs.  Yay.

Also, it looks like the dog is having a period.  No lie.  Yuck.  She's also all PMS-y and wants snacks and to nap.  So yeah. 

Elise is still all over her and wants to drag her around all over the house, so I bought her some reusable diapers that you put maxi pads in.  Elise thinks this is great.  She's all about the diapers.  She likes to choose the color and helps me stick the velcro on.  I never would have thought that she would have noticed or cared.  But apparently, if it involves her "Lillow", nothing is outside of her interest.

 



The bizarre part of this icky story, is that Elise has no comprehension that she may "become a woman" in the next year or so.  I've told her sisters, because they ask All The Questions, All The Time.  But if Elise were to start menstruating, it would be a completely blind-sided attack that would cause her to completely panic.  And the depressing part, is that I can do nothing to prevent that.  She has no concept of abstract ideas that don't fit into her interests.  The beauty of this whole Willow-in-heat fiasco, is that Elise is up close and personal.  It has suddenly become in her realm of interests and is noticed.  I cannot explain it the way I have with her sisters, but at least she will recognize it and it will not be frightening.  She will have an aquaintance with maxi pads and the idea behind them.  And so Willow has unexpectedly smoothed the way for the next giant hurdle in life.  I swear, I cannot thank this dog enough.