The Ocean Lullaby

What a week it's been!  Every time I think that I'm going to sit down and write in this blog, something pulls me away.  The balance of work, school, parenting, family and whatever else I can squeeze in there, sometimes has me scattered everywhere (literally and figuratively!)

Summer therapy is going well.  When we arrived at OT last week, the therapist told me that she and the Speech therapy were ready to graduate Nea out of therapies.  Her progress has been so good, and she continues to move along the continuum at a steady rate.  Of course I panicked a bit.  It felt odd to think that we would leave these people who have been with us from the very beginning.

When Nea is done with OT, she goes to the Speech Therapist's room for her session. The OT will then come and talk to me and tell me how things went.  She came out into the waiting, looking somewhat exasperated and like she just wrestled an alligator saying....

"I changed my mind."

Nea's focus is still skitchy.  She's consistently inconsistent.  She may need the extra help when school comes to have the extra OT time.  So we decided to keep OT on the books for awhile longer and see how the transition back to school goes.

However, she's ready to graduate from speech therapy.  Nea has learned tons, she does well and she will do just about anything that Diana asks of her.  She astounds us all with her receptive language and connections she makes that the rest of us don't quite get at first.  But Diana believes the next rung on the ladder for her is one that involves pragmatic communication.  Nea's motor planning has improved tremendously, and she will repeat a word correctly if you break it down for her.  What she needs now is using all of that language in social situations.  She needs to be part of group activities with peers and talking about toys, sharing items and exploring new things.  Diana can't give her that in 1:1 therapy.  She's beyond that now.

It's exciting and scary all at the same time.

Something new I'm noticing these days is more extensive pretend play.  Her stuffed animals are starting to play part of a scene where she does introductions.  "Hi, I'm Nea.  How are you? Okay?  Do you want to play?"  It's amazing to watch this part of her unfold.  She still doesn't like me to insert myself into her play.  But she will have that little party very near me, or even on my lap.  If I try to play a role with one of the people she gets very frustrated.  So I quietly observe and try to work on "who, what, when, where and why" as she's playing.  "What are they doing?"  "Who is the Mommy?"  "Where's the dog going?"  Sometimes I get answers, sometimes I get totally ignored.  

Dressed as "the princess"

Pretend play

She also has been doing a little more singing.  The ABC's are a favorite as well as "Itsy Bitsy Spider".  She can do the ABC's easily from start to finish. Itsy Bitsy is only the first phrase, and then start all over.  Singing utilizes a different part of her brain, so I'm happy to see her doing more of it.  Both are repetitive songs, so it's not too surprising she has caught on to them.

But tonight she surprised me.

Since Nea was just a couple weeks old, I have been singing her the same lullabye.  I would sing it only when she nursed.  I wanted the song to be associated with something so wonderful and pleasurable for her so that long after our breastfeeding relationship was over, the song would be connected to some very deep memories.  (Yes, I'm that crazy woman down the street) And I have to say as the years have gone by whenever I would sing that lullaby, Nea would look at me and smile.  It was something that passed between mother and daughter.  Only her and I shared the memory.  Of course she can't tell me what she's thinking when she hears it, but I always felt that our hearts spoke to each other as I sang the song.  (Yes, I'm that crazy woman too).

Here are the lyrics:

I'm the body of the ocean
The roar of the sea
I can swim with the dolphins and they sing to me.

And I roll on the waves
And I wash through the deep
As I go to sleep

And here is a link to the clip of the soundtrack from the CD:

Click on Track 4 (Ocean Lullaby)

I fell in love with this song the first time I heard it.  I had no idea how much Nea would love water and how much comfort water brings her.  Or maybe, somehow, on some unconscious level as I was nursing my newborn......I knew that life-giving water would soothe her for years to come.

Tonight while sitting in our rocker/recliner, Nea climbed into my lap  with her pillow and her blanket for some cuddle time.  She didn't want to cuddle chest to chest, but she likes to lay her back against me (as if I'm part of the furniture) and "rocka-rocka".   She seemed a bit restless so I thought that the lullaby might be a good idea.

.....and she started signing with me.

Every word.

I'm not sure I made it to the end, the tears started and I couldn't stop them.  I never dared to dream that she would ever sing this song with me.  I always just assumed that it was going to be a nice memory that her and I had together.  She proved me wrong.  Again.

And for a few brief moments mother and daughter rested in the serenity and safety of each other.

Letting their hearts sing the only song it knows......

Pure love.

Traveling with Autism

I am giving fair warning right now that this post is full of piss and vinegar.  I'm not going to be gentle with it, or tiptoe around topics.   Honesty has always been important to me when I write in this blog, and I'm not stopping now.

Family vacation.  Many families don't even attempt something like a big family vacation for fear a Griswold situation could occur at any moment.  But seeing family is important, and they just happen to live hundreds and hundreds of miles away.

We've traveled with Nea on this trek every year.  The first time she was 3 months old.  It was rather easy.   Well, aside from traveling with donor milk to be able to put in my SnS while breastfeeding (long story, later post).  We were darn proud of ourselves for doing so well and not losing one drop of precious milk over the course of a week.

Our next trip, Nea was 11 months old.  And honestly, it is all kind of a blur.  We were traveling for a funeral, so everything is fuzzy about the trip.  Too much stress, too much grief and too much anxiety of what was awaiting us.

We went last summer, and Nea was 2.  She had not been diagnosed yet, but we were waiting to go to the evaluation in August.   She traveled fairly well during that trip and I had plenty of activities for her to do along the way.  We stopped frequently so she could run around at rest areas and spent an entire day at the half-way mark town for swimming and relaxing.  Overall, not too shabby.

This time we had gained a whole bunch of different information.  We know about sensory issues and sensory overload.  We know that stimming means she is out of balance and we have to address her needs.  We understand that anything "out of routine" can send her into a tailspin.  We were going to hit her with a bunch of new experiences and we had to make sure we could keep meltdowns down to a minimum.  Again, she traveled very well.  Her iPad was a God-send to keep her entertained with movies and games.  Grandma made an "activity kit" full of fun things like stickers, crayons, markers, etc.  We stayed at a family members home this time (not hotel) and had access to a fridge.  This allowed us to keep favorite foods in stock (Greek yogurt is a must) and cheese.  We made sure to pack trains and tracks so she could build whenever she wanted, which she tends to use as an escape when she needs.

On the road

We had a wonderful time.  It was a memory filled trip with a train museum, a butterfly pavilion, the zoo, and a water park.  Plus it was the 4th of July holiday and lots of backyard fun.  We had a fabulous time and she made adjustments quite well.      

As you can imagine, we spent a lot more time out and about at all of these places.  We also ate many meals at restaurants over the course of 10 days.  Her Poppa and I are firm believers about not putting kids in impossible situations and then making expectations ridiculous for them.  I don't take Nea to the store when she's hungry and cranky.  We skip going out for dinner if she's had a bad day.  A restaurant is just something that has a potential of going really wrong, really quickly.  All that said, we are also well aware that circumstances are beyond some parents control (including ours) and you have to do what you have to do.

Watching her iPad in a restaurant

So while on the road, we gauged where we were going to eat on how we thought she could handle it.  If it was a long day or stressful day, we did a fast food place and brought stuff back to the house.  If things were more smooth, then we did the sit-down restaurant thing.  But even on one of Nea's great days, her differences are starting to really stand out.

Getting stuff out of her "purse"

Let's get one thing perfectly clear.  I'm not ashamed of her, or embarrassed by her.  But what frustrates me about a few of these situations has to do with me being afraid for her.  The "odd looks" and the "why can't you control your kid" stares are a glimpse into the struggles with society she is going to face.  I can protect her now.  I can glare back now.  I can Harper Valley PTA a rude person now.  But that's not always going to be true.  And I hate the fact that she's gong to even have to endure it.

How do you not become incredibly irate knowing that your child is going to face some pretty cruel people in the world?

Riding on the train

Nea seems to do more verbal stimming when she is faced with a stressful situation.  We don't hear it much at home, but we do hear it when we are out and about.  At one restaurant dining experience, we finally put her headphones on her, plugged them into her iPad and let her eat while shutting out the world.  She needed to "check out" and we had to make do with what we had at the time.

If she were 1 or even 2 and did these sort of activities (babbling, screeching, flapping) no one would bat an eye at her.  But she is 3, and society has different expectations of her.

And the pacifier.  Everyone has an opinion.  And quite frankly, I'm sick of hearing it.   So here are a few responses I would LOVE to be able to say to the rude, opinionated person who insists they need to express their concern.....

Jackass:  "She still uses that thing?"
Me:  "That 'thing' is what keeps her from flapping her arms around and screaming/screeching every 3 minutes.  Trust me, you want that 'thing'...the alternative will make you  even more uncomfortable."

Jackass:  " I'm surprised you haven't gotten rid of the pacifier"
Me:  "You know, I was surprised too when I saw your insensitive brain stuck up your ass, and yet, I was able to keep my mouth shut because it's none of my business."

Jackass: "You haven't weaned that?  Boy you're in for a night mare."
Me: "You think?  You know what, I think you should share in my parenting journey intimately.  Your shift starts at 9pm.  There are no breaks, there is no rest, there are no tap-outs."

Jackass:  "Hard to believe you still have her on those...."
Me:  "I know.  I have not done any research, talked to any professional, or sought any assistance on the best way to transition her.  Potty training or paci removal.....NEVER at the same time....what's your preference random citizen?"


I don't want her to have those stares and for people to look at her as "odd".  It breaks my Mommy heart.  And yet, I know I can't stop it.  Can I harden her to it?  Doubtful, I'm not sure she's wired that way.  She's a loving, accepting child....and I think it's a great quality.  Cynicism will come soon enough, I'm not teaching it to her now.

I know I could say these things.  I know I have the ability to squash an insensitive rude person like a bug.  I can be full of venom in a pretty frightening way.  But what does it gain me?  Does it bring anyone closer to understanding Autism?  Does my pissy attitude help the situation or just ignite it?

I know the answer.  It does nothing.  And I'm grateful for this blog, as well as amazing people in my life who offer support and encouragement.  So I continue try to find ways to use those situations for good and to make sure that people can move more towards neuro-diversity instead of "you're weird, you're not like me."

But if you wake the Mama Bear........

In Memory of Alex

It's been a reflective week for me in thinking about being the parent of a special needs kiddo.  I posted on the fb page the link to the story about Alex Spourdalakis .  Alex was killed in his home in an apparent murder by his mother who wrote details of the murder in the note she left.  Alex's mother and caregiver attempted suicide by taking pills, but were unsuccessful.

Alex's mom made national news when she claimed that her son was being mis-treated in a Chicago hospital and pleaded for help to get him to a place that could care for him better.  She contacted Autism advocacy groups who went to Chicago to speak on her behalf.  They found a tired, worn-down mom who was desperate for help and answers.

I watched this story unfold a few months ago, and was shocked to learn of Alex's death this past week.  My facebook status update read :

I've been following this story for awhile when Alex made national news for being restrained and chemically sedated in a hospital. And now the end to the story breaks my heart....for so many reasons. The severe level of desperation is there, and it's real. When I talk about isolation that parents feel who are trying to care for an special needs child,.....this is where it can lead.

I was wrong.  Really, really wrong.

Murder is NOT where it leads.  Alex's Mom did something so deplorable that it's difficult to even speak about.  Not just the murder of her son, but the fact that she refused help.  Alex's father tried to help, the hospital tried to help, alternatives for care were given.  However, Alex's Mom believed that only she could provide the care her child needed and refused any form of help she could get.

I believe her desperation was real.  I believe her exhaustion and her inability to think clearly were real.  And I believe that what she did she justified so easily in her mind that the thought became "normal."    I believe she was swimming in a sea so deep, she was never going to emerge.  And when people kept tossing her a life-line she erroneously thought she didn't need it.

The Autism community is up in arms about this story.  Some have gone so far as to say "understandable."

No.  Absolutely NOT.  Under no circumstances was it/is it/will it ever be alright to murder your child in cold blood.   She planned it.  They got the pills.  She slit his wrist so deep she almost severed his hand.   She wiped the knife clean when she was done and put it back in the block.   Let me say that again.  She wiped the knife clean.  The caregiver that was a part of this also killed the family cat so that it "didn't have to go to a  shelter."  Never was this Alex's fault, and never is anything like this "understandable."

It's taken me a week to figure out what bothers me about this story.  Yes, without a doubt, the murder of Alex was gruesome and should never have occurred.  These two women did something horribly wrong, and there is no excuse.  This is not what Alex deserved in any way.

Here's what bothers me.... the other stories that will go un-noticed.

There are many (more than you realize) parents out there who are at the end of their rope.  The stress and constant care that a special needs child requires can be daunting and more than overwhelming.  I've watched it unfold in the care I give to families.   Chronic illness comes into a family and destroys it from the inside out.  Relationships are strained, marriages collapse, family dynamics are shattered.   I'm not sure that the community or the services available help parents and caregivers in a real way.  (For the record, I don't think the system failed Alex's Mom....I think she chose to ignore it).

My Mom and I had a discussion this week about this subject and I will share what I wrote to her in an email.

" I hear it a lot from parents who have special  needs kids and they grow up to be special needs adults.  It's a fear of mine as well.  It's fine to let Nea pee in a diaper now...she's 3.  That's going to not be okay when she's 7 if she isn't able to do it.  And what happens when she's 16, 23?  There's a special needs woman who takes swim lessons where we do.  Her mother (has to be in her 70's) is there with her all the time.  She helps her in the shower, she blow dries her hair, etc.  It's touching and scary all at the same time.  No one loves our kids like we do....and we worry constantly about who's going to watch out for them if something happens to us or when we are gone.  Building Nea's network has ALWAYS been my priority.  And we are lucky.  Not every parent has that network to lean on."

And there lies the crux of the matter.   The network that parents need is crumpled and fractured or may not even exist.  Some special needs kids and their families are so isolated it is debilitating.  These families have to be able to be in places/events where it's okay to spin in circles, it's okay to run away from Uncle Joe in fear, it's okay to hide under a table, and it's okay to meltdown into a puddle of mush screaming because your hamburger was cut instead of given to you whole.  These aren't kids who are manipulating or mis-behaving or being bratty.  These are kids who are trying to cope.  And these are families who are trying to help them.  They are a part of us and we need to do better as a society to embrace them.

The guilt we feel is relentless.  We want to be there for them without fail, but yet if we don't get a break we feel we'll go insane.  And then we feel horrible that we've even had the nerve to ask for such a break.  Nea doesn't get a break from her Autism, it has been and always will be a part of her.

And there is my other epiphany.

 Autism is a part of her.  It's not a part of me.  Meaning, I  don't have the skill set to live in her world like she does.  Just like she doesn't have the skill set to live in mine.  We work towards middle ground.  That's what these endless hours of therapy are about.  She's learning about "Non-Autistics" and how single minded we can be.  She's learning about "Non-Autistics" and how silly we are for not getting sheer joy out of endless 360 degree spins while naked.  I will admit, there are times I find it more than frustrating and more than maddening and yes....I lose my cool.   And quite frankly, so does she.  We are Muggles and Wizards trying to figure out the common things that we know and understand.

It's not easy.  But it is our journey and I would not change one day of it.















Alex Spourdalakis, you have taught me many things.  Rest in peace, sweet child.  Rest in peace.

Being Brave

 Our local Children's Hospital hosted a magical event called The Enchanted Ball.  This is the first year for the event, and we were able to get in on the fun early.  It was a fundraiser for The Children's Miracle Network and for F.I.R.S.T (Foundation for Icthyosis and Related Skin Types).  I've never taken Nea to this type of event before.  We have done festivals and carnivals which are usually outside.  Those outside events are good because I think she likes the open feel.  This was inside a ballroom, and I had no idea what to expect.

Checking out the dance floor before everyone arrives

I'm not a big princess person.  Meaning, the messages of princesses is not really something I really like.  So we don't have any princess toys around here or girly, frilly things.  If Nea grows up to love pink and everything about it (just like I do!) then that's wonderful.  She's already inundated with that message in just about every media available to her.  So until the time she can make the decision on her own...and start showing her own likes and dislikes, I will be trying to keep the balance for her.  I am working to make sure she knows about trucks and mud and all things icky.  I really despise "boy toys" and "girl toys"...can't they just be toys?  Anyway, I digress.   "Damsel in distress" is not a skill set I particularly want her to have.

I am an equal opportunity fantasy creator.  The weekend before she had an opportunity to spend an afternoon with SpiderMan and IronMan.  This event was an opportunity for her to spend an afternoon with princesses and all things frilly.

As I said, this was going to be an experiment.  There were many stressors that were going to be present such as an enclosed space, lots of people, loud noises and the overwhelming excitement of seeing Tiana and Rapunzel.

There were well over 200 people there, and timing was a bit slow.  She was incredibly patient sitting at the table with Grandma coloring and watching the crowd.  She was animated and excited unless someone made eye contact with her, or said hello.  Then, she shrunk like a flower and tried to melt into the floor.  She does so much better if people talk to me first and she's allowed to look at them (size them up) on her own terms.  Once eye contact occurs, it's over.

When the dance started, all the little girls went up to the dance floor to dance with the princesses and the princes.  Nea was excited to hear the music, but wanted no part of that crowd.  She danced on her own, in her own space near our table and seemed to have just as much fun.

Dancing at the Enchanted Ball

Getting announced to the Royal Court was the one stretch goal I pushed for her.  I knew it would be tough, and it was....but squirming is growth and I helped her march through it.  She tried very hard to say hello, and mostly spoke through a few tears but she did it.  I didn't attempt  formal pictures because I knew that would be way too much.  One goal at a time. :-)

Introduced to the Royal Court

By the end of the afternoon, she was out of reserves and looked for a quiet spot.  Of course the best one was under the table.  Grandma and I just went with it and let her stay there the last 20 minutes of the Ball.  Because, that's what you do.

A quiet spot under the table

An afternoon filled with fun and with learning experiences.  This "pushing" thing is a tough balance for me and I'm constantly having an inner dialogue with myself.  Am I pushing too hard?  When does she get to say, no?  How do we keep moving her forward comfortably?  Temple Grandin talks about this a lot, and I always appreciate her words.  I don't have the answers for sure.  So I listen closely to my heart.....

.....always listening for a reply from hers.

Drinking from the fancy glass at the Enchanted Ball

Routine: "Habitual or mechanical performance of an established procedure"

Routine.  We all need it.  Kids really need it.  Our kids on the spectrum need it about 1000 times more than the rest of us.

Nea is missing school.  She asks about the bus and going to school every day.  And as her language increases, I'm also noticing that her echoing is getting stronger as well.  I'm not sure if that's a learning process with new language or she's just blowing off some stress steam.  She repeats phrases often, which I won't lie...can be maddening.

Nea's brain is wired in a way where she likes to keep things the same.  Repetitive behaviors is one of the hallmarks of Autism.  There are certain things that she likes said in a specific order....

Hearing a train....
Nea: Oh! What's that?
Me:  (she knows exactly what it is, but its the script she wants)
Nea:  (frustrated because I am saying nothing)  Mama!  What's that?
Me:  (sighing)  What IS that?
Nea:  It's a train!

If I veer from that script she gets very upset and gets very frustrated.  She recites that script every time she hears a train whistle.  If I say, "Nea, you know what that is....what is it?"  She simply responds with the line, "Mama, what's that?"  She learned that script when she was very young, and I was trying to get her to focus on something she couldn't see.  Dog barking, train whistles, etc.  But now its a script that brings her comfort and she uses it often.

There used to be a school of thought that it was important to "pull Autistic kids out of their world" and not let them engage in repetitive behaviors, or self-stimming activities such as spinning and hand flapping.  But what we are learning from adults who are on the spectrum is that it brings them much relaxation and decreases anxiety.  So now there is a bit of a shift to allow these behaviors in moderation so that kids can maintain a balance that works for them.

I love this description by Dr. Mark Bowers, a Pediatric psychologist.

"I do want to take a moment to acknowledge, however, how it must feel for a parent to see the Autistic ‘veil’ drop in front of the child’s eyes as they check out from the real world for a moment and become absorbed in a repetitive behavior.  Especially for parents who have been working with their child for a number of months or years and have begun to see progress; the child’s return into scripting and other stereotypical behaviors is a glaring reminder that the child has Autism.  It also serves as a reminder to the world that something is not quite connecting in the child’s brain.  I often conceptualize this as a neurological tug-of-war that is taking place inside the child’s brain.  The hardwiring of the Autistic brain is determined to keep the world simple and the same, with little (if any) interest in relationships or social connections.   However, as the child makes progress and begins to learn how much fun can be had with others and the value of having play partners, another part of the brain begins to compete for dominance."

We decided long ago that home is a "free zone."  You should be able to do what you want to do at home right?  If I want to walk around without a bra at home, because I  feel more comfortable then I should be able to do that.  If Nea wants to watch the first 7 minutes of a movie over and over and over and over....she should be able to do that.  There are so many rules in our world that we are expected to follow that it seems just mean to make her follow them at home.  Don't get me wrong, it's not Lord of the Flies around here.  She still has to say please and thank you, she still has to do her chores, she still has to use words when requesting items.  But she also gets to let her hair down too.

Yes she has chores.  Just 2.  The first is to open the back door and let the dog in when he's done doing his business outside.  The second is to put a scoop of dog food in his bowl every night.  Not horrible chores, but 2 things she is very capable of doing.   Those 2 simple things teach her a few things: listening for the dog when he barks (auditory processing) (opening the door but NOT leaving), caring for the dog (empathy) and accomplishment (self-esteem boost).

Okay, back to today.

Here's how things go when we go to therapy:
1) We wait 5 min in the waiting room
2) Bear comes to get Nea for OT (Bear is the nickname she gave the OT gal)
3) Nea goes to Bear's room for therapy for 45 minutes
4)  Bear and Nea walk hand in hand to Diana's room for speech therapy
5)  Nea is in speech therapy for 45 minutes. (Mom is secretly watching in the observation room)
6)  Nea calls for Mom and Mom comes in to talk to Diana for a few minutes
7)  Nea waves bye to Diana and goes to the waiting room.
8)  Nea pushes the button to open the door and runs to Jamba Juice (just around the corner)

Today it went like this:
1)  Waiting room wait was 15 minutes
2) Bear comes to get Nea for OT...she has a student with her
3) Nea goes to Bears room for 45 min of OT therapy
4)  Bear walks Nea back out to the waiting room because Diana is not ready yet and with another kid
5)  Nea is in waiting room again for 15 minutes
6)  Diana comes to get Nea from the waiting room...she has a student with her
7)  Nea goes to Diana's room for speech therapy (Mom is secretly watching)
8)  New activity to include playing a game with a peer.  Diana with Nea and Bear with the other child.  Diana and Nea walk to Bear's OT room
9)  Nea tries to play the game.....total meltdown

Now, before anyone gets all out of sorts, I am NOT upset with anyone about this scenario.   Diana asked me beforehand about playing with the peer and I thought it was a good idea.  Also, I totally understand how things come up and patient flow gets interrupted.  It happens to me too when I'm at work, and sometimes its just inevitable no matter how hard you try.  It's not anyone's fault.

This meltdown was pretty tough.  I haven't seen one like that in a long while.  Diana came to get me and I scooped Nea up for tight squeezes and handed her her paci's.   Her teddy bear (the cherished friend these days) was in my purse so that was given to her as well.  It took about 10 minutes to get her calmed down.   Diana felt she tried really hard and seemed to really want to participate, but just couldn't keep it together.

We went swimming after therapy.  90 minutes in the pool did her a world of good.  We know she loves the water and the natural compression of the water is good for sensory integration.  She did tons of underwater swimming and was exhausted when we were done.  Wrapped in a towel after swim is another one of her rituals that she needed today.

We learned a few lessons with this one:
1)  We are trying again next week, but the peer will come to Nea's speech room and Nea will not go back to Bear's room.  That was probably the biggest stressor for her.  When she leaves that room, she believes she is done.
2)  Use visual cues for her before the peer activity.  She used visual pictures in school and they worked well for her.  When it was time to sit on the carpet, the teacher would hold up the picture and tell the kids it was carpet time....and they all scampered to find their seat!

Leaving routine is a stretch goal for Nea.  She's going to be uncomfortable for awhile as she tries to gain this skill set.

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.