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)

31 for 21: "Non-Verbal"...or Not

Should I even put the "31 for 21" now?  I mean, if I am honest, I am already working more like 29 for 21...  *sigh*

ANYWAY,

Why do I refer to Elise as "non-verbal"?

I mean, to be honest, she has a reasonably extensive vocabulary.  She CERTAINLY doesn't hesitate to speak her mind.  So bare-bones technically, she is not non-verbal.

But.  Between her lack of age-appropriate language, her lack of clarity, and her weird pronunciation issues, she is desperately difficult to understand.

Take for example, instead of the typical mispronunciation of "W" for "R", she subs in "L".  The "bloun house" instead of the "brown house" (her identification of where we live, we moved from "blue house").  Or more interestingly, "HLella" instead of "Netta" (her grandmother).  She uses a "Gah" followed by a complex tongue roll instead of "Grandmama"(her other grandmother).  And the list is pretty extended for the subs, drops, and rearrangement and "pig latin"-ing of sounds.  Some of this is based on the low muscle tone thanks to the Down Syndrome, but much of it is more a processing issue, than a physiological one.  Her brain is not processing sounds in or out properly.

She has a vocabulary of a 2-3 year old.  (She'll be 11 in a week.) 

She has happily added to her ability to offer different one word options, if you don't understand one, she'll offer synonyms or subject sibling-ish words or sign or enactment gestures, hoping to queue in a useful piece of information that will help you to make sense of her subject.  I have affectionately referred to her new speech crutch as "the bastard child of Taboo and Charades."

She literally did not speech until she was almost 2.  Like at all.

This is the area of life that is functionally the lowest. 

If you don't know her, it is unlikely that you will be able to figure out ANY of what she is saying unless you know a toddler and even then it will be minimal.

If you do know her, it is unlikely that you will be able to understand her, unless you know her subject matter going in, or you are willing to play her speech game. 

SO.  I will explain her to friends or those in the medical profession.  I usually gauge how much to volunteer or just call it non-verbal to avoid the looks of panic that surge when someone tries to talk to her and they understand nothing. 

It's kind of like telling someone that this is English, and then sitting back:

 



It's kind of mean, and not particularly helpful.

So.  Consider that Elise has something to say.  But know you will have to meet her on her own terms and in her own language to discover her world.  It's seriously fun.

Elise has renamed one of her para-pro's at school...and it has stuck, and not just for Elise.  The entire class and many others throughout the school refers to her as such and she loves it!  Ms. Gonzalez is "Goddess".  Wouldn't you accept that name change??  Isn't it worth the upgrade to understand her??  :)

Summer Livin'...

...Is not so easy.

Elise thrives on scheduling.  Which I really like, myself...most of the time...but not like Elise loves it.  Elise loves school and spent 3 weeks asking to go back. I felt a little badly, that she couldn't go hang with her friends...but a smidge hurt that she didn't enjoy vacation with me...

I keep wanting to do another Esther serial.  Car Etiquette.  Because, wow, do we need it!  But every time I turn my back on her, Elise is dumping stuff out, eating hand-over-fist out of the pantry, or smacking her sisters.  And so, unless I do it at night, which makes for some bad lighting, it's not going to happen until school starts back.  And so I sew and read and clean within arm's reach.

Charlotte and Amelia are playing really well together...and as Elise has never really gotten the "hang" of playing, she finds herself shut out.  She mostly stands around, and after a while, starts whining that she's hungry...or watches 1.75 minutes of a movie over and over and over.  Right now it's Astroboy and Wallace and Gromit...and we still like the Halloween shorts of Shrek...STILL...Why has Netflix not taken this down???

Behaviorly, she is having a hard time, too.  Elise has been off her ADHD medication for a month or so.  And we can REALLY tell.  She is skittery.  She is hitting.  She is volatile.  But she had taken to twitching and several ticks.  It was one of the side-effects listed on her ADHD medicine.  She had a follow-up with her neuro who got to see a couple of her ticks.  I was paranoid-ly worried that the ticks were side-effects of her medicine or indicative of seizures.  But thankfully, the neuro thought not.  She is pretty sure that they are actually out-growths of OCD.  She told me that ticks usually manifest between ages 6-10 years old.  Ticks are not too foreign to us.  Both her father and myself have dealt with them ourselves.  Back to that old apple and the tree again.  And Elise loves to organize her toys by color and size.  She delights in anything that "match".  And so I am starting her back on her medications again this week.  And so we shall see.  I keep hoping we will see the end of them sooner rather than later...because unlike most of the time, I am less worried about the ticks for her, now that I am reassured that it is not a red-flag for a big baddie, I am worried for me.  There is nothing like ticks to activate a dormant issue.  I used to really have issues with it myself and was able to beat it back..but when Elise starts ticking, I feel the compulsive need to move come back...like when someone mentions ticks (the bug) or lice...suddenly you have to itch your head...tell me you didn't just run your hand through your hair just now, right?  But back to my selfishness...I need her to stop ticking, so mine doesn't return and make me CRAZY.  Because for me, I am aware of my ticks and the inability to stop really makes me nuts.  I really don't need the power of suggestion, frankly.

In related news, Elise is now getting speech therapy from a private entity.  First time, ever.  We should have done it sooner, but this is the first time since she was 4, that I don't feel like I am drowning in commitments.  Elise and Deidra are working on feeding, sign language again, and social give and take conversation.  The sign language is as much an independent form of communication as it is a physical marker to slow Elise down and remind her all the parts of a sentence.  The therapist also gave us a referral to a speech device specialist.  This specialist will do an intake with Elise and assess her strengths and weaknesses and will recommend a device that will help her best.  I have been forced to wait out everybody's vacations, but eventually we will get some new answers.  And hopefully, Elise will qualify and she will get her hands of something that will help her communicate with her peers...and it won't be such a guessing game when she tells us all about her newest obsession...Like a few weeks ago and it took me several days to discover "Sare Bot" was "Dinosaur Max" from Dino Squad...which she LOVES...and she was SO frustrated that I could not figure out what she was talking about!!  It's one thing to not understand and be sad for her myself, it's a whole 'nother when she is aware of the communication breakdown and is depressed on her own.  That breaks my heart.

If she could tell you, she'd probably be counting down until school starts.  Right now (for once) she is playing with her sisters...School.  With their dolls.  :)

31 for 21: #27 Hey, Are You Talking to Me?

No, seriously, is she talking to me? 

Yes, and she just told you a lot of things that's she been doing recently.  And is expecting you to answer, now...really.

*SIGH*

It is interesting that I friend of mine should decide to 'fess up about her biggest darkest fears today over at Chronicles of Ellie Bellie Bear.

It is very similar to the fears that have been growing over here.  In a nutshell, she is worried that her Bear won't ever talk and it will shrink her future. 

Um, Yuh.  Feeling you, Anna.

My advice that I posted up in response, was this:
"Talk about everything. Be your own life narrator. Until it makes you bonkers. Elise didn't even start babbling until she was 3, or attempt words until she was 4 and 5...she's still super delayed, but has progressed terrifically over the last 3 years.... Trust me, I SO understand!!!!!"

When Elise was little, I read an article talking about the hypothetical Einstein Syndrome.  It sounded like good advice.  I felt encouraged and decided to act on the theory...within reason.  I believed with reasonable intervention, my child would be able to hang on by her fingernails and wouldn't get too far behind, despite her diagnosis.  That if I believed she could do it and worked with her tirelessly, she could.

Fast forward a few years.  Despite intense, consistent intervention, therapies, and LOTS of parental involvement...she was getting more steadily behind her peers.  I was struggling with a lot of self-berating for not getting it right.  Did I not really believe it?  What was I doing wrong?  Then I realized that Elise had had a LOT of medical issues, so perhaps that was making an impact?  At the end of her chemo, and the beginning of being put into the school system part-time at age 3, I felt surely she would start her upward climb.

Again...not so much.

I decided that as long as I treated her as if she could do things, then she would continue to have input and opportunities, and I quit thinking about it...I totally pulled a Scarlett, "I shall think about that tomorrow!"

Again, fast forward some more...  I realized abruptly a few weeks ago, that my Magical Age Nine would not be the magical age I had hoped it would be.  That she was not talking and communicating as I had hoped she would be.  As a matter of fact, she was so very far behind, it is interfering with her ability to make and keep friends...and even play...despite the progress she has made.  We are still playing the Word Association Games that have become such the staple in our life.

And I started thinking forward to the same fears as my friend Anna is worrying over her little girl.  I started really wondering about Elise's general independence and communication ability.  I started concluding that our intervention, instead of helping her stay with her peers, was more just keeping her treading water...just keeping her from drifting backward in the flow of life...holding.

I find myself wondering again, if Elise will ever be independent.  I started pestering Ethan about my worries, and we concluded the same thing.  Keep on treating her like she she would improve, and don't start panicking, yet. 

I really don't know, what Elise's future will be.  I have decided to "worry about that tomorrow", too.  There is no need to borrow trouble.  Even God reminded me of that recently, when I was worrying if we were burying our heads in the sand.  Matthew 6:25-34...It was quite the gift, frankly!

Really...tell me this doesn't help you, too!

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. "  ~ Matthew 6:34