Water

Nea loves the water.  It's one of the first things we noticed about her when she was a baby.  Bathing in the tub was tons of fun and she would kick and squeal in the bath.  She enjoyed it so much, her Poppa and I thought it might be a good idea to enroll her in a swim class.

We went to our local YMCA for a Mommy & Me swim class when she was 6 months old.   She LOVED it.  Nothing about the water scared her, she was never hesitant, and she happily played in the water for as long as we would let her.  Of course when summer came, we spent most days in the local pools.  But we always returned to swim class at the Y in the Fall and Spring.

In my research I've learned that kids who are on the spectrum are very attracted to water.  Being surrounded by water provides a natural compression and feels good.  Some autistic kids cringe at touch, and some of them crave deep pressure....both varying extremes,  but each kid can find comfort in the water.  The water helps with balance, with proprioception and is a wonderful tool for sensory integration.

There's no reason not to build on this love of water. In fact, there's a very real reason.  We need  to be sure she can maneuver well in the water.

Nea @ 15 months

The number one cause of death in children with Autism is drowning.  Why?  The answer is simple.....

As I said, they are naturally drawn to it because it helps sensory deficits that many of these children suffer from.  Any type of water is fine.  There have been children that have drowned in water fountains as well as lakes, swimming pools and the like.  This is a tragedy of epic proportions and I hope no parent ever has to endure it.

Also remember that many of these kids are prone to wandering.  It doesn't take but a second for something to catch Nea's fancy and for her to wander off.  She doesn't have the same built in "stick close to Mom"  that most kids her age have.  Of course 16 month olds tend to wander too, but should move to a different developmental stage by the time they are 2 or so.  The wandering piece is such an issue that there are therapy dogs who work with Autistic children and are also taught how to track for them.  So not only do these dogs help to teach social skills they also will go and find little Suzy if she should venture away.  Some times the kiddos are tethered to the dog and the dog is given a parameter of a "travel zone."  Essentially the dog knows, "we stick close to the grown-up human" and doesn't allow the child to wander away.

It's important to know too that most Autistic kids do not have a sense of "danger" when it comes to the water.  There is no hesitation, there is no concern there is only "getting in" that seems to be hardwired.
I've seen this really begin to manifest in Nea as she gets older.  Some would call her a "dare-devil" but I know what she's doing and she's just trying to meet some sensory needs.  Her face has been under water for weeks now.  Sometimes I have to pull her up when she submerges herself because I'm fearful that she "forgets" she doesn't have gills.  She recently has started diving head first into the pool.

Nea @ 26 months

We finally joined our local YMCA this past September.  One of the branches has a great therapy and recreation pool that fits Nea's needs perfectly.  The girl is lucky that she has a Mama that feels confident in the water.  Swimming lessons were a "you must do it, no questions, this is not up for debate" things that my Mom made us do.  We grew up in a small town that was on a river.  Being a confident swimmer was high on her priority list.  I've been very grateful over the years for my swimming background.

The YMCA has great swim classes for all ages starting at 6 months.  In fact they have great programming for kids hands down and I highly recommend them!  Nea was in a swim class in the Spring, but after about 2 lessons (and lifeguard heart attacks) I pulled her out of class.  I couldn't get a handle on her impulse to be in the water and her inability to handle some of the instructor interactions.  It was the summer when she was diagnosed with Autism and sensory issues which made everything become very clear.

So we've been working most of the late summer and early fall in the pool together every weekend.  She has made a lot of progress and I try to simulate some of the things I know she will encounter in a class (she is enrolled for the upcoming quarter).  Repetition is key for her and she'll be better at class routines than she was before.   It seems that signing works best to communicate with her when she's excited.  It's like the visual cue gets in, even if the verbal one doesn't.  So I've been signing at the pool many things like "wait", "sit", "go", etc.  I think it will help.

We are fortunate to have a YMCA in our area that offers classes specifically for special needs kids.  They will be working on waiting for her turn, communicating with the instructor and listening to direction.  This is great prep for school coming up in 6 months!  They will be able to work on impulse control as well because she'll have some individualized attention.  So she'll get her social needs as well as some therapy needs met all at the same time.

Nea @ 2 1/2 years

We are looking forward to swim lessons in this new class!

Workin Wednesdays...Posted on a Thursday

We've had a family emergency that needed lots of attention, so information about therapy this week is a little behind.  


Overall it's been a good week for therapy.  Lots of work is being done and lots of progress is being made.  The developmental therapist that comes to the house writes this week...

"....really enjoyed coloring and became very engaged in it."
"Better with transitions without crying and stress."

Another session with "J" on Friday which I am hoping goes just as well.   I have no reason to believe it won't as long as she gets some good sleep in the night before.  (Yes, that's always a crap shoot!)

Occupational therapy with "A" on Wednesday was very physical.  I've learned now to put Nea's hair up in some way so that it doesn't fall in her face while she's flipping, jumping, turning, spinning, flying, etc. across the OT gym!

Nea's getting better with greeting "A" when she comes to the waiting room to get Nea.  She still hides her face a bit, but she will watch her with her eyes.   If you know this girl, you know that's a big step.  It's funny, she likes spending time with "A" and will keep eye contact with her, but initial meeting is still hard.

I sit in the rumpus room (that's what I call it) while "A" took her on a ride in the beanbag chair while riding on the scooter.  Then it was off to the ball pit.  I could hear Nea whining from time to time, so I know she was getting some stressors here and there.  Getting in the ball pit arms first seems to be a less than fun experience for her and she tries to avoid it.  Of course there's no way "A" is going to allow that. ;-)

Then it was a scooter ride like I've never seen!  This was a small brown scooter that "A" sat on and put Nea in front of her.  She then moved that scooter around and spinned it at the same time.  It reminded me of the carnival ride "the Scrambler."  She was turning AND spinning at the same time.  They were moving so fast, I couldn't even get a good picture!!  It was crazy and I thought I would puke just watching them.  But Nea had a smile on her face the whole time.

She ended all of that craziness with a bike ride, which of course is something Nea always enjoys.

Into the rumpus room (where I was waiting) and "A" had all kinds of things planned for her.

 This is a bowl with navy beans in it.  A great sensory exploration game that Nea actually had been exposed to in Fun Shop.  However, she avoided it like the plague and I never understood why.  Now that I understand she's a sensory kid, I guess it kinda makes sense.

She was hesitant at first about this play and fussed a bit.  But once she got a feel for it (no pun), she seemed to really enjoy it.  "A" was thrilled and took off her socks and shoes to get her feet in as well!  I think the plan next week is a bigger tub, because Nea wanted to sit in it all the way and really enjoy it!

The rumpus room has all sorts of amazing stuff in it with different levels, textures, heights, etc.  Through the tube, over the hill, across the mat, under the overhang.....all part of sensory integration.  Different surfaces teaches her body about space and proprioception.  

The tire swing was next on the docket, but we all know how that goes.  It just is a source of stress for her and she really starts flailing when "A" puts her in it.  She was crying so hard, and was so upset she actually said her first sentence!

After 2 or 3 spins in the tire swing, "A" finally stopped it and Nea reached out to hit her (oh my!) and screamed.......

"WHAT ARE YOU DOING!!????"  

"A" and I almost fell over.  We couldn't believe that she said a phrase, let alone THaT one!!  

Recognizing that Nea had reached a point of "can't take it any more" she went and got a different kind of swing.  Essentially it was a swing that you see at any park, but it has more boundaries for her body.  She's more enclosed and not have to worry about using her core to balance.  And oh how she enjoyed it!!

You have to understand "A" doesn't just swing you....she spins you and swings you and spins you the opposite direction just as fast.  Nea kept saying "weeeeee" the whole time and giggled and laughed. Good sensory integration (remember from my last post...that swinging thing is important) and she had an enjoyable time as well.  Win-win for everyone!!

Her speech therapy session went very well.  She listened well, had good scanning with her eyes, stayed engaged with Diana and repeated many words and phrases.  

We are still trying to incorporate the picture cards for communication.  It's a slow process and just takes lots of repetition.  Watching Diana is always a learning thing for me as well.  When trying to use the picture cards at home it was almost like they were toys to Nea and she didn't really get the concept.  Now we introduce them sort of like how we introduced signs.  So during this whole speech session Diana had some juice and fruit snacks.  Every time Nea reached for them, Diana would pull out the cards and and show her, repeating the phrases on them to make a sentence.

I      Want     Juice. 

Like I said, it's a process and is something we have to teach her so it takes time.  

Not every single day is a victory, but certainly we had many of them on this Workin Wednesday!

The Truth Hurts

It's been an awful day.  I spent a good portion of the day in tears.  I promised myself that I would share stuff, and that includes the tough stuff.  Today was one of those tough stuff days.

I read a  story today about an autistic kindergartner that did not get lunch at school because there was an issue with the bill.  This story rocked me to the core.

It comes on the tail end of  this story about an autistic kid who was left to ride the school bus for 5 hours.  This story made me really upset.

And in the Spring this one surfaced about an autistic kid who was bullied by a teacher and an aide.

So yah, it's been a heartbreaking day for me.

I understand these stories have been around.  And I understand this is not the first time an autistic kid has been subjected to some awful event in the course of time.  I also understand that kids who do not have autism have also had horrible things happen to them in the school system, on the bus, in the lunch room.

I get it.  I really do.  But let me share this.  My kid interacts with the world differently than any other neurotypical kid.  Right now, my kid is non-verbal....and although she's making progress I do not know if she'll be able to speak her needs in 6 months (when school starts for her).  So stories like these terrify me.

Nea does not communicate her needs.  Right now she has parents at her side that are pretty savvy in anticipating her needs as well as trying to guess what she may need along the way. She doesn't eat or ask to eat or drink unless we put something in front of her.

We are in the process of trying to teach her how to use these communication cards.

And until you have to live in a world where this could possibly be the only communication tool your child has for several years.......you're not going to understand this fear.

I don't have any issue being my daughter's advocate.  And I don't have any problem getting out my Mama Bear paws and taking swipes along the way.  But what I'm most upset about....and what I cry about with the loudest wail.....

Is that I have to in the first place.

Her Poppa and I do everything we possibly can for her.  And on a busy morning of the very first day of school I can really see how the lunch money piece gets lost in the shuffle.  A new routine, teeth-brushing fights, hair combing battles, clothes that may be itchy and get removed so several other outfits are tried, picky breakfast eater and it takes 4 tries of different items before a food is ever eaten........I could totally see how I might forget to stick the $3.00 in her backpack, or pay online or whatever the process was.

But where was the common sense?  This kid was SITTING IN the damn lunchroom .....no food.  Not one adult in the scenario thought , "Wonder if we should give John Robert some lunch?"  Yes, mistakes happen....but this is of epic proportion.

As a parent, even if I do every thing down to the letter and I forget something.....will someone step in the gap ?

Tonight, as we are going through our evening routine, we notice that Nea's toe is bleeding.  It didn't  just have some blood on it.....but really bleeding.  I pick her up to inspect it closely and see a big puncture wound in her toe.  Blood is dripping onto the floor and we take her upstairs to clean it up and make sure it doesn't need stitches.  (Once I got it cleaned up, and looked good I think the wound will heal okay.)

Nea was oblivious to it.  No crying.  No "ow!" No running to one of us for comfort.  Remember, her sensory issues play a role in how she perceives pain.  Apparently, either the feeling was so deep and painful that it was comfortable OR she didn't register the message at all.

And on top of this I have to worry about if my kid is going to be fed lunch?

Just to bring it all home we now have a copy of a letter that reads.....

"Dear K...
Please accept this letter as confirmation for referral from the XXX County Department of Public Health, Child and Family Connections, Early Intervention Program to XXX School District # XXX for Nea to begin the transition process into a 3-5 year old program." 

And so it begins.....

I want to make it perfectly clear that I do not for one second believe that every school teacher or every school district is below standards.  In fact I believe that there are many, many wonderful educators and administrators who have the best interest of kids at heart.  But I'm not naive enough to think that we'll never come in contact with a "bad apple" along the way. 

We all have issues.  The world is harsh.  Everyone has problems.  Yah, I know.  But today is the day I grieve for the fact that the world I'm sending my child into may hurt her more than help her.

And it's the saddest realization, ever.

The Windshield or the Bug?

Wheww!  Therapy is getting tougher.  We knew they were going to push her and they continue to do so!  It's okay, pushing is growth....but it's also mentally exhausting.  We had many meltdowns today.

The past few nights have been well with sleep, getting in at least 8-10hours at a time.  Nea was well rested this am when we got to therapy.  She had a little breakfast and we were ready to go.  All good combinations for good therapy sessions.

OT works her hard!  Physical work.  Lots of physical work.  Rolling back and forth for some vestibular work as well as working on her core.  Rocking back and forth on this huge orange cylindar is both relaxing and exhausting.

We are working up to swinging.  Nea doesn't really like it.  In fact, she kinda really hates it.  It's taken her several sessions to even sit in the tire swing (it's a balance thing) and then as soon as "A" starts to swing it slowly side to side, Nea practically does a back flip to get out of it!

Laying back in it while it slowly swings (distracted by "A"'s cool toys)  helps immensely.  But trust me, she didn't stay longer than about a minute!  Why do we care about swinging?

Swinging helps her body organize and regulate her sensory system.  Getting vestibular input is paramount to sensory integration.  Your body's vestibular system gives your brain information about balance, movement, spatial awareness, position, etc.  It helps you maintain your posture, your balance, use your vision correctly and calm yourself.  Essentially it keeps you "even-keeled"  If it's out of whack (as in Nea's case) it makes for a very stressful day.

Some kids crave this sort of movement, while other kiddos are really sensitive to it.  Nea is one of those kids that's sensitive to it.  This is why the OT piece is so important...."A" directs it and controls it and gives her just the right amount without overwhelming her too much.

The bike is always a highlight and Nea gets better every time she's on it.  She's starting to move very fast these days!  We put our request in to get one, so hopefully we'll hear soon.  Not sure how many bike riding days are left before we hit the cold weather, but it will be ready for us in the spring!






I never really thought about OT and Speech working together, but as I watch these two disciplines work together it really does make sense.

"A" pulls Nea around on the scooter (sitting on a beanbag and covered with a heavy ladybug blanket) while Diana (yay!  I can use her name now!) works on words.  It's dual work.  Nea has to stay balanced on the scooter as it rolls and Diana uses it as an opportunity to teach Nea how to communicate her wants.  The practice the signs and words like:

Stop
Go
Wait
Want
....and put them all together....
"I....want....to....go."  Working on words is tough.  Working on sentence structure is even tougher!  We certainly aren't there yet, but the foundation is in place.

And if OT is physically exhausting.....Speech is mentally exhausting.

This is Diana and Nea in the speech work room.  I don't attend sessions anymore, but can observe from a different room behind mirrored glass.  (It's all very CIA like! ).

Nea seemed sorta spacey today, but Diana was happy with her work nonetheless.  She seemed less vocal and more like she was information gathering.  She's also head-tilting in this picture, which I think is her way of bringing in information.  She seems to do it a lot when she's trying to understand something.

Overall it was a busy, rambunctious day in therapy with lots of good work, and lots of homework to do.
We will be working on "Stop" and "Go" at home, which is important as we try to prevent Nea from bolting.  She will wander if left on her own, and she's so lost in her own world, I can't seem to get her back to get her attention.  So having a verbal and visual cue (Diana gave us a stop sign) to help reinforce.  This is one of the safety pieces we are trying to put into place.  Nea is VERY attracted to water, and she would just walk right into any pool, pond, lake or river.  Water is very comforting to her and soothing.  However, it is also the leading cause of death in children with Autism.  She's not aware of any danger and many times not aware of her surroundings.    And it's one of the number one reasons I would like to get her a therapy dog.  I'll talk about water and wandering in another post.

So even though the day started out so positive, and therapy was good (although tiring) her coping skills were just not available to her today.  This means that she sits at DefCon 6 pretty much all the time.  So trying to get out the door looked like this.....

I feel really bad for her when she's in this state because I just hate that she's in some sort of inner turmoil.  Of course I comfort her and hug her.  That worked for about 2 minutes, and then she was on the floor again in this state.  She did this from the therapy door, all the way to the front lobby.  Screaming and crying and flailing the whole time.  And, because she doesn't have good upper body strength (especially her arms) she did quite a few face plants.

Keep this scenario in mind when you see a mom struggling with her 2 year old at the grocery store or the mall.  The initial thought always is, "Uggh...what a bratty kid!"  Maybe that is the case, and maybe it's not.  Please don't judge.

Eventually we made it to the front lobby and I was exasperated.  So I finally gathered my thoughts (I'm surprised I had any at this point) and sat down on the couch.  We had her backpack which has her iPad in it and I pulled it out as a last ditch distraction for her to be able to get herself together.

Successfully pulling herself back together

The plan was to go swimming today after lunch.  But, after all this mornings work and stress and tears..... she just didn't have it in her.

When she finished lunch, she found the beanbag chair, pulled it to the room, grabbed her "kee-kee" and.....

Some days you're the windshield, and some days you're the bug.

Let's hope we have less bug days.  They are tough!

"She'll be just fine...."

I am fully aware that this post may come off as offensive to some people.  I have been thinking about it for days on how to word what I am trying to say without coming off like some lunatic or rabid Mom with a bone to pick.  But there are a few things that have been bugging me for awhile.

When I'm bugged, I'm supposed to write.  After 20 years of trying to get in touch with some sort of creativity (which I believed I had none), I have learned how to listen to that "nag."

So in preparation, if you've noticed some things in my post that perhaps you recognize as something you may have said, please do NOT take any of it personal.  Over the course of the past few weeks, I'm able to pull together a picture based on comments and conversations that I've had.  

You should also be aware that I'm not angry or upset.   In fact, I've really been just confused.  And so as I move through some of these thoughts I believe that I am ready to put them into words.


As more and more people have come to understand Nea's recent diagnosis of Autism, I've had a variety of responses and reactions.  I'm going to go through them one by one and share my thoughts.

"Autism?  Really?  Are you sure?  How can anyone be sure when she's 2?"

At first, this one really hurt my feelings.  Would I give my child this diagnosis for the ease and notoriety of it all?  (I know, sarcasm isn't helpful.)  But once I moved past that initial thought I realized that there is still a lot of education that needs to be done out there about Autism.  It's hard to fathom that a meltdown in a 2 y/o would be 1 clue that puts her on the ASD (Autism Spectrum Disorder) spectrum.  Let me see if I can give you an example.

When Nea has a drink with a straw, and the straw goes out of alignment with the liquid in the bottom ( that part where you start sucking air), this sends her into what I call DefCon 5.  DefCon 5 is the 22 second warning that occurs before total meltdown.  She will scream, she will kick, she will arch and many times she will hit herself in the head over and over again.  If I can't move her from that place quickly I'm going to have a full blown Hell-Raisin' meltdown to contend with.  Instead of asking me for help, or handing me the cup to help her.  She loses it.  Even when I try to explain to her that we have to do A, then B, then C and Mamma will fix it....she can't follow that process.  Can neurotypical 2 y/o's?  Yes, they can follow a two-step process easily.  Nea can't.  At least right now.  It's one piece of the puzzle for her Autism.

I say HER Autism.  Because each kid has their own version of what Autism looks like.  If I've learned anything....it certainly is that!

And for the record, she was evaluated by a team of specialists in their field of development.  And in short, we all need to understand what the definition of Autism means.


"But she's high functioning.  She'll be fine."

Now I'm never sure if they are saying that to help ME feel better or to help themselves feel better.

First, terminologies are changing.  "High functioning" "severe autism" "mild autism" "Ausberger's" are all terms we have used that are going away in 2013.  Why?  Because the fact of the matter is you have Autism, or you do not.  And ADHD is another term that is going to get included in the ASD diagnosis.  There is a lot more to this and maybe I will discuss later in another post.

Think about it for a second.  When a person has asthma, they can have varying degrees of the disease.  Some asthmatics require daily medication, some only seasonal.  Some need a breathing treatment at the sign of a first cough and some can wheeze for an hour before a neb treatment is needed.  They all have the same disease, but it manifests itself differently in each person.

The same is true for Autism.  Nea does bring a strong skill set to the table.   But her skill set lacks many things as well, that other children her age have.  The one that comes to mind is in regards to social skills.  That brings me to the last thing......

" But she is social.  I've seen her laugh. She giggles! She seems so happy."  

Social skills and emotions are different.  I think that's the first thing to keep in mind.  And helping her to understand emotions plays into social skills.  Let me see if I can come up with a scenario......

Let's say there is a kid on the playground who is crying and upset because he fell off the monkey bars.  He's got big tears, a loud cry and holds his head down in sadness.  It would be socially inappropriate for another kid to come up to that kid and say, "Hi, lets play ball!" A kid who has Autism is probably not going to understand that social nuance of "when someone is sad you do not ignore it."  A kiddo with Autism may or may not recognize the emotion.  And then he has to figure out the "underlying social rule" that goes along with it.

It seems like a silly example, but probably most of us don't realize how we learn social behavior.  It's catching the eye of someone, watching them with regard to your own behavior.  Most of us do it and don't realize we are doing it because it's just ingrained in how we function day to day.

I think this scene in the Temple Grandin movie explains it the best.  In this part, Temple has just completed her Masters of Science and is at her mother's for a holiday event.  The scene shows a conversation at the event, the stress it caused, the meltdown afterwards and a conversation with her mother.

The line where her mother says, "I don't want you to avoid people" sticks with me.  But that is the thing that many autistic people want to do the most.  Those social nuances that we all take for granted, are lost on a person who is on the spectrum. They are very literal thinkers, so puns and innuendos are really difficult to navigate.  I have to remind myself of this a lot as I try to teach my child communication.

We practice recognizing emotion by saying what it is as she's experiencing...."You are really sad." or "Mama is very angry." or "Poppa is happy!"  and point out facial expressions.  When we are at the grocery store and I hear a kid across the store crying, I make a beeline for that kid....  "See, Nea, the boy is very sad.  He's crying."  (I'm sure those parents think I'm a bit off my rocker!).  Sometimes she really watches, sometimes she doesn't.  Until proven otherwise, I have to remain acutely aware that Nea's social skills require constant attention.

Nea has Autism.  It's okay to say it.  It's okay for her to say it.  I want her to be able to embrace it and understand that it is and always will be a part of her.  If we "qualify" it for her, I feel like we do a dis-service to her and quite frankly offend many others.

And, I don't know the definition of "fine" just yet.  At least not what "fine" means for Nea.  I don't think that part of her story has been written just yet.