Can you understand me? Jargon 101

When I talk about jargon speech do you know what I mean?

There has been a lot of discussion this week about Nea's jargon speech.  We think Nea actually believes that she is communicating.  She uses a cadence, she uses inflection, she pauses throughout the sentence, etc.  We call it "word salad" around here.  She puts together bunches of syllables and sounds so well that it almost sounds like another language.  And if you say, "Sorry, I don't understand."  She will repeat it the exact same way with the exact same pauses and exact same inflections.  How crazy is that?    Did she create her own language some how and the rest of us are just too dumb to understand?  Her jargon sentences are long and end with a word that we recognize in the English language. So conversation may go something like this....

Me:  Nea, did you go to school today?
Nea: elkdjrowiejosidlsldl, dusoidjksdjrbaklid, lskdjflskdrosiuoijsfjlsk school
Me:  (arggh) umm....Did you see your friends?
Nea:  slkdjifojeoijsildksrosiBilly, lskdjrdiosuldulskdSusie, dksduoirueiowjsldkjfslkdjschool
Me:  uh....What did you get to do today?
Nea:  dkjfdslkdjiudsdkfljdjteacher, ldkjdfieowijeijsdlkfjslbus, bdlskdjfdidlksdjfoschool
Me:  Great!  (good gravy Marie!)

Her jargon speech is very melodic and cherub sounding. It's almost as if she's singing when she does it.  Her Poppa and I, her teacher and her therapists can pretty much get the message she's trying to convey. I'm not sure if we are all teaching her English or if she's teaching US a new language!

One on One at school with OT

But as beautiful as it sounds, and as cute as it is......it doesn't help her with being able to communicate effectively.

Babbling and jargon talking is a normal developmental phase.  She should be long past that phase by now.  Like, well over a year past it.  Her speech therapists both talk about her motor planning issues.   One of the exercises she does is a flip book with different sounds.  It's almost like practicing a tongue twister over and over and over again.

The flip book has 3 different sections.  Each section has a picture with the word written above it.  The book starts with the pictures all the same.  Then a section is flipped, and new word appears.  Then another, then another....

bee    bee   bee
bow   bee   bee
bee   bow   bow
bow   bow  bee

......on and on.  She does very well at the beginning...saying the 3 pictures with the same 3 sounds.  But when the picture flips, and she has to move her lips, tongue and mouth differently...she stumbles quite a lot.  She also goes so fast, that her speech therapist thinks its in there somewhere, but buried in the jargon speech that surrounds it.  The million dollar question is how do you fix it?

At this point, everyone believes that we leave it alone.  The theory is that as she gains more language, she'll start exchanging jargon for English words.  The school speech therapist believes that her mind is moving so fast, that the rest of her verbal language cannot keep up.  She has hopes that Nea will have a large vocabulary and speak well as she progresses.  Her rehab speech therapist does not want to discourage it, because NO ONE wants to discourage a child with Autism to stop talking.   Vocalization  is the key to language development.  That's why we get so excited when babies utter those first cooing sounds.  It's the start of communication.

So in the meantime everyone will just continue to teach each other.

Working on fine motor skills

Water table with a friend

In Honor of Mikaela Lynch and Owen Black

This week has been difficult for many of us in the Autism community.  Two precious children were both discovered dead after leaving the safety of home and family.  It's a tragedy that is beyond comprehension.  And unless you live with a child who has tendencies to run or bolt or wander, you have no idea the daily fear that haunts us.  As if that's not bad enough, the outcry that came from those who do not have these experiences about the Lynch's poor parenting skills is even further beyond my comprehension.

A mother lost her child to a horrific accident and some are standing  in judgement of it all?  Ridiculous.  And they should be ashamed.

I'm going to share with you my own experiences which I have been reluctant to do in the past, but I think sharing this information is the right thing to do.  The Lynch's should not be shamed, nor should the Black's for the tragedy that happened to their children.  But if we all don't share our experiences... their stories look "abnormal" when in fact so many of us know how easily it can happen.....

When Nea was 26 months old, she walked out the front door.  Her Poppa and I each thought the other had an eye on her and in a split second she made a decision to leave.  Not only did she walk out the door but she went across the street and down about 4 houses.  When we realized she wasn't in the house, and I was about to call 911, a neighbor was on our front porch with Nea in her arms.

It's easy for people to say, "you should have been watching her more close" and maybe that's true.  If anything would have happened, neither one of us would be able to live with ourselves.  I cannot convey the amount of fear that still makes me weak in the knees when I think about it.

How did it happen?  Mis-communication, sure.  But also, neither one off us were prepared for this sort of thing.  No one discussed this with us.  We didn't realize this was an issue.  We didn't understand that children with Autism are prone to wander.  We had no idea that the number one killer of children with Autism is drowning.

We do now.  We know the things we have to do to keep her safe.  And with all that in mind....we are fully aware that something could still go very wrong.  We plan, we learn from others and we keep vigilant.  And I am also confident that the Lynch's and the Blacks were doing the exact same thing.

If Nea wanders off, she cannot communicate who she is.  If someone should ask her her name, she would never be able to respond.  Hell, the fear factor alone of talking to a stranger who's looking her in the eye would make her shut down.  Even if we were to teach the script to her, she would never be able to express it.  

And water.  What can I say about water.  She gravitates to it.  She actually runs towards it.  Once, my sister caught up with her before she jumped into a pond.

If I were a rich women, the VERY first thing that I would get Nea would be a trained dog.  These dogs are trained to stick close with a child, alert if the child goes out the door, and can be tethered to the child in public places.  These dogs are also trained to track a child if they go missing.

Nea's getting older and stronger.  We have to come up with a new game plan now to continue to keep her as safe as possible.  We just ordered Big Red Safety ToolKit.  We decided to buy it on our own so that other families in need would have a free one available.  Nea's sense of "danger" is about that of a 9 month old child.  Now imagine that same 9 month old child with the power of a 3 year old.  She can open doors, figure out locks, and walk right towards whatever peaks her interest.

If any good can come from these tragedies I hope that is the fact we are raising awareness.  Is there an autistic child in your neighborhood?  Do you have the families contact information if you ever see the child alone?  Do you know the best way to approach the child without frightening them?  Have you reached out to the parents?

The worst part of parenting a child with Autism is the isolation that you sometimes can feel.  Everyone working together in the spirit of community could actually save a life.

My heartfelt prayers of peace to the families of Mikaela Lynch and Owen Black.

Mom at School

So today was a very big Mommy Rite of Passage for me......volunteering in the classroom.  Oh my gosh, what a wonderful time!  It's also Teacher Appreciation Week and how fitting that I was in a classroom, witnessing first hand what teachers do every day.

I have to go back a few years first.

There are many teachers that I have encountered along the way who gave me an awesome memory, sparked a thought, helped me in some way or inspired me to achieve.  There are a few that come to mind...

My Mom- My very first teacher.  She taught me that home is safe, that hugs are more important than money and that school is THE most important thing to do in childhood.  Seriously folks, my parents had very strong opinions about school and they were not afraid to share them.  I'm not a road scholar by any means, but it was my Mom that taught me "you can do whatever you want."  ...and with those words, she gave me wings.

Mrs. DeSollar- She was my nursery school teacher (we call it Pre-K today).  I have a very vivid memory of a crystal clear box that had 26 little drawers in it.  Each draw had a letter on it.  Inside the box was some sort of little trinket that start with that letter.  The "B" box had this tiny little bee, and I loved it.

Mrs. Drijie- 4th grade. My memories of her are those of kindness, and compassion and sweetness.  She had the best smile, she never raised her voice and she taught us all how to write "fancy"  (cursive...which hell I think they teach in kindergarten now!).  She also had "The Reading Cave" which was a little private area that you were able to go into and it had curtains around it.  Most kids were excited to go in there to read a book and not be disturbed.  However, I kept peeking out of the curtains...that alone thing was not for me!

Mrs. Fearneyhough- 7th grade.  She taught English or Writing or some such.  I don't remember exactly.  But I did like her class because she never took any sass.  7th grade boys are full of sass and she could always smack that down in an instant.  It was fun to watch!  She also taught me how to spell tomorrow.  There was a boy who lived in our town, his name was Tom Orr (seriously...that kid lived in our town!)   "All you have to do is add o-w behind Tom's name."  I've never spelled it wrong since.

Mrs. Osmer- High School Consumer Ed.  She was a teacher that made you THINK!  You had to think about what it would be like to have a baby (and we carried around eggs ever so gently to care for them).  You had to think about what you would do if you were stranded on the side of the road (and we learned how to change a tire).  You had to think how you were going to handle money (and we learned how to balance a checkbook).  I could go on and on....but I'm telling you, that woman sparked LOTS of thinking in my brain.  She taught me that it's important you understand the world you live in.

Mr. Dwyer- 8th Grade science.  Craziest teacher I've ever had.   When you were in trouble you might have to sing the Beatles song Michelle My Belle.  Or, you might have to wiggle on the floor like a worm.  It was crazy....but I did love science.  I'm not sure if that was true when I walked in or if that's something he fired me up with!

Mrs. Webb & Mrs. Braner-  High School Lit/ Drama Club & Chorus.  Holy smokes, these ladies had every minute of my afterschool activities.  Practice after practice after practice of stage blocking, singing, memorizing lines.  The line I always dreaded, "No scripts next week!"  Ack!   They instilled in me a love of music and theater and they taught me all kinds of self confidence.  My high school days were filled with music and theater and I am better for it.

Mrs. Tracy-  Chemistry.  Yup, that's right, you heard me.  Chemistry.  That class was tough, and she was a tough teacher and I wanted nothing more than to show her I could do it.  The Periodic Table became my new best friend and I loved every minute of that class.  My first year of nursing school I also had a Chemistry class......and aced it.  Why?  I had a good teacher teach me fundamentals, get me fired up and excited about learning all the parts and off I flew.

Mr. Gholson- Biology and Zoology.  What can I say.  Fruit flies.  We were able to cross breed fruit flies!  Oh it all was just so dang cool.  Every experiment he had us do and write about was always so amazing to me.  It's usually not cool for a girl to love science but he kept making me want to do more and more!

You have them too.  Teachers that are plugged into your memory for a variety of reasons.  Our teachers do so much for our children, and I am not sure they always get the credit they deserve.

Okay, back to today....

After lunch we dropped Nea off at school.  We arrived at the same time the bus did, so she walked right in with her friends.  There is one little boy who just seems to love her to death and he grabbed for her hand.   She waved him off to get to the teacher to get the bear she was holding and carry it into school.  When she got the bear, she found her friend and they walked in hand in hand.  It was so sweet.  And I was so proud of her.

I went back to school for my assigned craft and snack time.  The OT gal stopped me before I went into the classroom.  She explained she was very happy with Nea's progress, and very happy to see her doing transitions so well.  Yay!  Transitioning from task to task is on her IEP goals so it's good to know she's making progress.

When I walked into that classroom the speech therapist was singing and dancing with the students.  10 little people holding hands and dancing in a circle.  Nea was so engrossed in what she was doing, she did not see me come in.  However, all of the other students saw me immediately!

"Nea's Mom is here!"   And then all 10 of those little people (minus 1...she was too busy dancing) came over to say hello.  They each said their name, one of them showed me the inside of his mouth and the other patted my leg in approval.  I seriously felt like a celebrity.  Nea finally saw me and said, "Oh, hi Mama"

The kids were so cute, and so excited.  We made dirt pudding cups for a snack and painted flower pots for Mother's Day (shh...don't tell Mom!) The gummy worms were a major hit and even the kiddos who do not do well with texture couldn't resist a touch or two of the worm.

It was fun to watch the kids do normal kid stuff.  But nothing amazed me more than the teacher.  Clearly a Pre-K teacher of special needs kids is going to have something about her that you just can't put your finger on.  She loves those kids like her own, she knows every single hang-up they might have and she floats around the room like a fairy.  Seriously, there is a TON of activity in that classroom.  And she moves from wiping one hand, to helping another kid hold a crayon, to encouraging others to keep hands to themselves and cheer for one that finally picked up the brush to paint.  As she moved from one activity to another, she noted Nea and another boy playing well together "Oh, good, I'm going to leave them alone with that for a minute and come back to them."  Fluidity, no doubt.  You would have to have hulk-like fluidity skills.  She also has a camera around her neck, always at the ready.  Snapping photos and posting them for parents so we can see our kids be amazing in a classroom setting!   She made it look effortless.

I was exhausted.

All the while....she's teaching.  She's talking about colors, she's counting cookies during snack time.  She's encouraging play and talking and asking for help.  She's giving these kids direction and support all in the same breath.

I have many friends in my life who are teachers, and I am certainly the one who is blessed by those friendships.  They teach me every day.

This is my thank you to teachers that have touched my life in any way.  And this is my thank you to teachers who touch my child's life now....and years from now.

Thank you.

Exploring school grounds.....spider? waterspout?

Making  alphabet soup

cutting up tomatoes for soup

taking care of caterpillars so they can be butterflies!

Editors Note:  And, there is not enough Clorox wipes in this world for a Pre-K class room.  There are also not enough hand-wipes either.  The teacher and her aide are constantly wiping something down or cleaning something up....including faces and hands.  Even if you do not have a Pre-K kid, go get some and give them to the Pre-K classroom in your district!

The practice of Self Care

Today I had the most awesome massage.  And I wanted to post about it, but it seemed odd to post about massages on a blog that is primarily about our journey with Autism.  But really, the more I thought about it, the more it seemed very important to post this discussion.

Parents raising children who have a disability have a higher incidence of stress and stress related issues.  Health issues and pyschosocial issues top the list.  We know what stress does to the body, science has long proven that phenomenon.  Most of us have felt stress at one time in our lives.  It can ruin an entire day, it can make you confused and befuddled, it can make you have zero patience, it can cause poor decision making....and on and on.

Clearly, these are not really attributes that help me be a great parent to Nea.  I would also add, that I think parenting, PERIOD,  is stressful.  Stats are alarming however for parents of children with disabilities.  Focus is on the child, and everything else gets lost.

Nea has done a great job in learning self care.   She knows when to find her "big blanket" (the weighted one), she asks for squishes when she's stressed, she will grab Karen (the 2 lb penguin) when she needs a little extra grounding.  Nea practices self care probably much better than the rest of us!

And that folks is what this is about.  If I expect Nea to learn self care and know what to do if she's feeling stressed....shouldn't I model that behavior for her?  And quite frankly, shouldn't I be practicing that for myself?

Get a massage.  Get one regularly.  Experts say that you should incorporate massage into your lifestyle much like you do diet and exercise.  Twice a month is wonderful, once a month will work.  But if you have areas that are super tight, you might need to go on a weekly basis to get everything balanced right again.

Stop thinking of something like massage as a "splurge" and start thinking about it in the terms of better mental and physical health.   There are a myriad of reasons why you should go on a regular basis.


If you've never had a massage, I STRONGLY encourage you to get one.  Here are few tips!

• When you first lay on the table, there is a little bit of "oh my, I'm nekkid except for my undies under this thing" nervousness.  Let that go.  The massage therapist is a professional and you don't have a thing that he or she hasn't seen before.  They don't care, really.
• If you have a "I don't like a deep massage, it hurts" thing going on....then you need to talk that over with the massage therapist PRIOR to the massage.  They want to talk about those kind of things regularly.  They are also amazing readers of body language.  They can sense when you tense or grimace, and they are not going to have you writhing in pain on the table.  Just like any good relationship, it's all about communication.
• I think the facial/scalp massage is an amazing thing.  Seriously, we use our facial muscles tons throughout the day.  You don't realize just how much, until someone starts massaging your cheeks and jaws around.  Wow.
• And your forerarms.  They aren't a place you  usually rub often.  You see folks rubbing their neck or shoulders when getting tired or stressed, but never forearms.  Trust me....it's a treat!
• And then of course your back.  Ohh my lands.  When you are laying on your tummy (face down with your head in that head support thing and you wonder to yourself "My bed at home needs a hole in it!!") and get that first rub, you just want to melt.  You'll lay there thinking, "Yup, I will be here every month.  Oh who am I kidding, I'll be here weekly. Oh what the hell, I'm moving in!"  You'll never wonder again if you should have came when that back is stretched and massaged!

As I said today I had an awesome massage.  The last few days have been stressful around here as I'm learning that a 3 year old is very different than a 2 year old. I've had a raw egg tossed on the floor, a colossal meltdown because I would't let her jump out of the 2nd story window, and water spit across a room all in 36 hours.    Not to mention that  our household was sick and we were slugs most of the weekend.   Nea's expressive language is still lacking and there's lots of jargon talk involved.  But her comprehensive language is right on the money.  So as she continues to age it seems to be more and more frustrating not to be able to get her point across.  This is stressful for her, and in turn for us as her parents.  It makes everything topsy turvey at our house from time to time.

Wednesdays are tough for Nea.  It's double therapy time and lots of work.  The OT was sick today, so we started the morning doing speech therapy.  Instead, she did her own OT workout in the waiting room!

"All Aboard!!!"

 Remember, speech therapy is difficult when there is not OT beforehand.  She did well, but she was taxed there is no doubt.

We went to lunch with Poppa and then took her to school.  We were rushed, and didn't give her a great transition time.  Lesson learned.  She NEEDS it.  I left her in the teacher's arms crying and screaming for me.  However, the teacher told me after school that once I left, Nea was fine.  She played with the other kids, she was engaged in activities and she didn't have any more tears.

She was all smiles when I picked her up and she was hot!  They played outside today, so she ended up getting a good OT workout anyway!

But the day had caught up with her, and she was fading fast......

"I thought pre-school was not like school"

And in a case like that! We head for ice cream.  It's the one thing that can keep her awake and keep her motivated!

"School?  What school?"

Effective  ice cream eating

Now, make an appointment with your massage therapist TODAY!!