The holidays are over....back to work!

We made it through the holidays!!

This is the fun age for kiddos just starting to "come into" the notion of Santa and the whole leaving presents thing.  I can't say Nea really grasped the presents part, but she did start to call anyone in a red hat "Santa!". When we got up on Christmas morning, she was happy to see the pretty packages, but didn't really understand that they were needing to be opened.  Of course, after the 1st one, she was done.  Happy to play with a new toy and spend the rest of the day doing her normal routine.  We really let her pace herself, and even once she went upstairs to her tent and chilled in there for a few minutes.  Finally we just let her bring the presents to us as we went about our morning.  She would bring one to me and say  "Open? help?" and we opened it together.  Then she would take off and come back with a new one 30 min. later.

Big sticker book from Grandma!

At Grandma's house it was about the same, except more people and bigger cousins.  But as the afternoon got to be too much, she went up to Grandma's big fluffy bed and laid under her pillows for a few.  I'm thrilled that she knows how to meet her own needs at such a young age.  If we can avoid the meltdown situation, it's just all the better for a stress-free day.













Last week's therapy sessions were a nightmare.  OT and Speech both ended in tears and lots of emotional stress.  We all weren't sure why, but it turns out later that Nea ended up sick, so perhaps she just wasn't feeling well.  Developmental therapy was also very horrible.  I was home sick myself and watched her meltdown into oblivion as she cried and threw herself down, then started banging her head onto the floor.  That's some very painful (and could cause nasty bruising) self-stimming so we just ended up stopping therapy early.  She was far too stressed and far too "gone" to be able to do any real work in the first place.

Stressed after therapy.  Needing all comfort items.

Overall, last week....blech.

This week however was much improved.  Nea shook off whatever bug she had after a couple days, Christmas went well and we were back in therapy again today.

OT sessions are increasingly more difficult as "A" works to improve her upper body strength and core.  It seems that she's regulating well with the "where's my body in space and time" thing and so she's moving Nea on to making her way in the world much easier.  This means lots of obstacle courses  that require Nea to go over, under, through, around, carry, under, jump, tipsy, etc., etc.  It's tiring for her and she tends to face plant a lot because she lacks that upper body strength needed.  Nea does not look down or put her chin anywhere close to her chest.  Doing so perhaps makes her dizzy or makes her head spin enough that it makes her unbalanced and she falls.  So to compensate, Nea will bend her body at the waist and cock her head to one said, looking sideways.  This increases her field of vision, but in the long run, doesn't really help her.  So our homework this week is to do activities that require her to look down more and make sure her head is moving, not just her whole body.  It's one of the reasons why she plays with everything at eye level.  She kneels in front of her train table when she's playing there and she likes a desk that's nose height when she's lining things up.  But, you all know how therapy works.  Just when you start to get comfortable....you gotta stretch even more.

Speech went very well.  Nea's learning verbs and I was shocked at how many she knows.  Diana would hold action cards up for Nea and say "What is the boy doing?"  or "What is she doing?"  and Nea was right 100% of the time with answers like "reading" or "swinging" or "swimming" or "jumping", etc.  I was amazed!  One of the cards was a baby crying and when Diana asked her what the baby was doing, Nea had no idea.  She finally looked at Diana and said, "What is she doing?" and Diana explained that she was crying....she was sad.  It looked like a pretty lost concept so we'll see how that one develops.  There's a part in the Temple Grandin movie where her aunt takes pictures of different faces and has Temple write on the picture what the emotion is to help her remember.  It's that whole social nuances thing that is going to be tough.

Nea's new thing is to growl when she's frustrated or not getting her point across.  She was tired and a bit stressed as we were walking to the car, which is why I let her have her paci.  She's doing the pattern of cough, cough then growl.  FINALLY she got out what she needed to ask me.  And gave me the major stink eye when I didn't tell her what she wanted.

She'll hate me later, but I'm glad I was able to catch this moment.....

Sometimes, change just comes

We rolled a little differently today.  Hey, what can I say.  We fly by the seat of our pants around here!

"A" the occupational therapist was sick today, so there was no OT this am.  We could have just skipped the whole thing, but Diana, the speech therapist, wanted us to come in.  So...we did!

This means Nea had no OT prior to speech therapy.  This is an experiment in "How well can you handle your sensory issues, without being centered and grounded."  (Note to self: IEP must include sensory breaks)

She really did alright, overall.  But you could certainly tell it was hard to focus and it was difficult to stay on task with things she didn't like.  When Diana pulls out the word cards (practicing words and annunciations) Nea slinks down her chair to the floor as if she's melting.  She throws out sighs and cries of desperation.  But Diana wasn't buying it and let her know immediately.  Nea stopped with the whining, but she wasn't happy about it one bit.  Ahh, there's that little 2 year old personality we all know and love!

Busy Beads in the Lobby of Pedi Rehab

At one point Diana was getting out a game to play with her, but apparently it wasn't something Nea wanted to do.  So there was immediately melting, immediate crying and immediate frustration.  Diana ignored her at first and then said....

"Nea, if you don't want to do something.  You just have to say, 'I don't want to do it"

Nea squared her shoulders, leaned in towards Diana and glared, "I DON'T WANT TO DO IT!"

Uhm....Wow....alrighty then.  Coming through loud and clear sister!

Moving on Diana did more cards, more words and more work.  Nea hung in there, but she really had no patience for much of anything.  Finally Diana said, "Nea, what do YOU want to do?"

Nea's response, "Thomas.  I want Thomas"

Diana had not pulled out any Thomas things for their session (she presets the room up before we get in there) so she told Nea, "Well I don't think I have him in our toy box."

Nea then offered, "Can you find him?"

What?

Diana was impressed that Nea took an abstract idea and used it in an appropriate way.  Nicely done my sweet.   I told you, we were functioning a little different today.

Someone told me there was inside snow at the mall that fell every 90 minutes from the center of the mall.  We made a beeline for the mall to see this magical snow, but we didn't see a thing!  Of course we can't get through the mall without a train ride!  We also tried the Carousal, which was new for us!

Learning about the carousal

Train ride!

In my time absent from the blog, I have had the initial meeting with the school regarding Nea's transition out of the 0-3 program (Early Intervention).  I've said it before how nervous it makes me and I'm sure I'll continue to think that way until the "unknowns" are figured out for me.  Once that's done, I'll be able to settle a little easier.  Transitions are hard for kids with autism.  Transitions are hard for parents of kids with autism.

Believe it or not, my statistics course may afford me a little more breathing room when it comes to out of class work.  There is no 20 page paper to write, but rather homework packets to complete.  I may be able to juggle my time a little better.  That's good.  I have these 3 books to study before February 6th, Nea's evaluation with the school district.

One step at a time.  We'll just get through the holidays and move on from there......

Toy Bombs

Happy Holidays to all as we move into this magical season!  I have to admit that I'm a "newbie" Mom when it comes to kids and holidays.  There are a few rules that apparently are in the fine print of my Mom Contract.  One of them has to do with the holidays and how you navigate through the season as unscathed and with your sanity intact as possible.

I took Nea out on a shopping trip with me last week and we ran across a Thomas the Train table.  It was all set up, all ready to go.  Tracks put together, and trains on them just waiting for little hands to come and push them along.....

Playing with trains at FunShop at 18 months

 My girl is a train girl.  She's a MAJOR train girl.  Her fascination with the wheels began at a very early age and it's just continued to be one of her fixations.  We could do worse I suppose.  So anything with a train, has a train, looks like a train or smells like it might run on a track is something that makes her very happy.  When she's stressed, she will line them all up in categories.  It may be color, it could be size, it might be function.  She seems to choose at random...although I'm sure it makes sense to her.  It's only now that she's starting to have the trains "engage" with one another in some pretend play.  Pretend play is a good developmental milestone.  Only watching and playing with the wheels of a train is fun, but something a 12month old would do.  She's 2 and 1/2.  It's nice to see her changing the way she plays.

Back to our shopping trip.

My little conductor saw that train table and said every train word she knows!...

"Thomas!, Percy!  Gordon!  track!  ChooChoo!  Thomas!  James! Mavis! Are you okay?  Thomas!"

My heart sank. Oh wonderful....

The trains were attached to the table, so it wasn't really possible to move them around the track.  But when I tried to move away there was lots of yelling and screaming.  Uh oh....Toddler Hissy Fit comin up!  

I've come to know the difference between Toddler Hissy Fit and Autism Meltdown these days.  It's a fine line, but it can be done.  Toddler Hissy Fit usually centers around "I didn't get my way." vs. Autism Meltdown which centers around "I can't express/communicate/ground myself."  Like I said, I'm becoming a pro.

The short answer is this.  I was tired, it was time to get home.  She left the store with a train named Luke.

I lamented on facebook about the situation to which my friend Lois replied....

"Who in their right mind takes their child with them when they go shopping in December?  You got what you deserved." 

Fine print.  I didn't read it.

Yesterday I had some shopping to do and decided to take Nea with me.  I went to a DIFFERENT store to avoid that train table all together.  So clever I thought I was....

 I steered clear of the toy aisle and stuck to my list which included fun things like deodorant, toilet paper, body wash, pencils and the like.  However, I was TOY BOMBED!

In office supplies she found an Ariel figurine that someone had left there.  So I handed it to her with the plan of distracting her and getting it away from her.  Sure, I got it away from her when she saw the motorized car in the deodorant section.  Great, I got rid of Ariel (dropped her off in the Cold and Flu aisle) and ended up with a car that played "Pump Up the Jam".  What the ??....

Then it hit me as I looked around.  Every parent is playing this game.  Drop a toy here, end up with another one there.  There were toys and fun tidbits that kids had grabbed and a parent tried to get rid of quietly while Jr. wasn't looking.  You can tell its the parents and not the kids because it's usually on the top shelf and pushed back or sitting upside-down.  

Except of course to my eagle-eyed kid who played a master game of the "Where's Waldo" of toy finding.  

The obnoxious Pump Up the Jam car was left upside down near the cat food.  Ha!  I was winning!  Then I heard it as we turned the corner into Paper Goods.....

"Percy!"  

Dammit!

The short answer is this.  I was tired, it was time to get home.  She left the store with a stuff train named Percy.

Nea and Percy- Christmas 2012

Back!

Where have I been?

 Well first, there have been a few things that have steered me away from taking the time to write in the blog.  First, there was the tragic death of a young girl that went to my church.   It really was a tough time trying to move through those days and I was given the honor to speak at her Celebration of Life Services.  Truly, everything else seemed very trivial.

Secondly, Grad School is killing me!  I have been drowning under studying, reading, researching and attending class 3 hours a week.  Also during that time, I have to work a full time job, spend time with my family, help my daughter move along the continuum of her therapies and continue to make sure our relationship stays strong.

I'm also being clever in combing a few things.  My research paper for my Operations Management class was

"Hospitalization and the Child with Autism"

....hey, killing 2 birds I guess. Don't judge.  I'm trying to combine research for better experiences for my kid as well as get some homework done!!

Alright, so where does that leave us and what's been going on around here?

Therapy is non-stop.  Nea does her 2 hours of therapy without me present at all.  This is great prep for school!  She happily goes off with "A" and Diana and makes no fuss about it.    It feels like we are doing therapy even when we're not in a therapy session.   Jon and I take all the therapy ideas and translate them to real life and how we function around home.  It has helped on several occasions with several situations.

Imitating Mama with the iced tea and work badge.

It seems that we fight the sensory issues the most.  Knowing that this gets in her way often, is what becomes like the Beast I want to DESTROY on a daily basis.  She's been having issues even with walking becoming difficult.  She has always done really well holding my hand and walking (like into a building or crossing the street or whatever.)  But lately when she walks, she turns her head to the side, leans forward and walks almost backwards.  Or, she'll stop completely and start spinning and spinning with a few jumps in between.  It's damn near impossible to move from point A to point B.  I talked to her OT about the situation.  She explained  that Nea is trying to control sensory input (and there's a lot hitting her at once when you're out in the big world) so she's trying to manipulate the movement and self-stimming along the way.    She also gave me a few tips to try and get a better handle on it.
1)  Keep a hat on her
2)  Keep a backpack on her.
3) Try sunglasses.
4)Tell her, "First we will walk 8 steps, then we will spin 3 times, then we will jump 2 times, then we will walk 8 steps...."

Clearly, I'm going to have to leave my house far earlier if I'm going to do this intricate dance every where we go.

So I headed her advice which helped a little.  And then noticed when she walked with other people (her Poppa, Diana the Speech therapist, etc.) that odd way of walking isn't there.   She doesn't lean forward or turn to the side when walking with them.  She walks in a perfectly straight line.

So today in more discussion with the OT....... In short, it's ME...not her.

Dammit.

My knees and poor walk are giving her bad feedback so its hard for her to figure out how to work with it.  "A" explains that I need to give her different feedback when I am walking with her so that she can position herself correctly.  So I practiced a bit today when we were walking around the mall.  I held on to her wrist, rather than her hanging on to my fingers.  I also changed my pace a bit and tried to walk more "gruff" (If that makes sense it all)

Not one spin or lean from her as we walked.  Once again it is proven that the girl knows what she needs and makes accommodations....the rest of us are just silly for not understanding.

Her sessions in OT are going well and this week she graduated to doing at least 10 minutes in the hammock. The hammock is a big deal because it's the first device she's ever been in that doesn't have a "boundary" and she was "free-floating."  When Nea got out of the hammock, she looked like she'd been napping for hours.  She looked so relaxed.

Relaxed after OT, Speech, seeing Santa and a train ride!

Speech has been good too. Diana is so happy with all her progress and putting phrases together.  The Developmental therapist has noticed as well and makes many comments on her notes that she leaves for me.

Some of Nea's favorite phrases.....(which she is using correctly, not just echolalia)
"What are you doing?"
"_____ where are you?"
"It's okay!"
"Bye, bye Poppa!  See you later!" (whenever we pull out of the driveway)
"What's this?" or "Who's that?"

Oh they seem so simple, but these are huge advances for her.  This was a child who had a 5 word vocabulary and now she's phrasing together appropriately.   It's nothing short of amazing, if you ask me.

We've noticed over the last 10 days that she is starving for information.  She wants words for things and wants to use phrasing more than ever.  It reminds me of that scene in The Miracle Worker where the switch suddenly is turned on in Helen Keller's head at the water pump.   Nea wants names of objects now and she will hold them up for  Jon and I to label for her.  Then she will repeat the word.  The key now in this language development piece is for her to initiate the words on her own.  We'll have to push her even more, to move her from "repeating" to something more of conversation about things.

I watched her get very frustrated with Diana today in speech as she pushed her along this continuum.  Diana had a bin full of Pooh figurines and Nea really wanted them.  She lunged for them, grabbed for them and slammed her hand down when Diana pulled them away.  Diana signed with her....

"I    want    Pooh"
Nea slammed the table again.
"Nea, use your words.  Let's try again.    I  want    Pooh."
Nea responded, "POOH!" and threw her hands in the air.
Diana smiled, "Yes, Pooh!  Now....what do you want?"
Nea's response, "Want, Pooh"

Okay...we'll take it!  Does this make sense?  It's more than learning words.  It's about communicating.  This is where it gets more and more difficult.  No wonder abstract things like feelings are so hard to understand.  How do you teach THaT?!

A simple Hello

Have you ever been to a Pediatric Rehab department?  I'm telling you the place is just nothing short of being a really cool place.  They do such a fantastic job at making all the hard work, seem just like playtime.

The energy is palpable the moment you walk in the door.  The receptionist always greets Nea with a smile and a hello.  If Nea smiles back or says hi....the receptionist makes a positive comment.

"You said hello to me today!  Thank you!"

Now she may not know that we are working on social skills and greeting people, or heck, maybe she does.  But she makes sure that Nea understands, "hey, I know you stepped outside of your comfort zone"  As a parent, that means a lot to me.  When the therapists  (OT, PT and SLP's) come out to get kids for their appointment times she greets the kid first of course.  But if anyone else notices her or comes towards her she notices them as well.  I've watched therapists get down to eye level and make sure to say hello to kids.  Nothing goes un-noticed there.  If a kid walks towards the fish tank to check it out...something is said. In short, every kid gets special attention and recognition for just participating in "waiting room" social life.

Nea must have really felt it today.  We were sitting and waiting for "A" to come out and get her.  Nea picked up a book and brought it over to me.  She's still not into "reading" but she does like to talk about the book and turn the pages.  That's serious improvement from where we were a few weeks ago!  As we are moving through the book, a little boy walked over to us.  Nea was standing in front of me and I was holding the book in my lap so she could see.  This cherub faced boy became involved in the story as well, and he wanted to help turn the pages.  His mom was shocked that he come over to us (complete strangers) in the first place and I was shocked that Nea stopped what she was doing and looked at him.  Finally she reached her hand out to his face, and touched it gently, saying, "Baybee"  He smiled, and reached towards her chest to touch a pumpkin picture that was on her shirt.

And immediately 2 Moms were just about in tears.

I don't know this boy, I've never seen this boy before and I have no idea what needs  he has that would bring him into Pedi Rehab.    But for whatever reason these 2 kids made a connection.  (Also, this "baby" was around Nea's age.  I think she's just calling other children "baby" when she sees them.)  I was so proud of my girl for acknowledging another kid her age, reaching out to say hello in her own special way and allowing him to reciprocate.  In my eyes, we didn't need to do any therapy!  We had success in the waiting room alone!

OT gets harder as Nea makes progress.  She is tolerating everything so well.  And therapy works in a way that when you get comfortable with one thing....we move you right along to the next.

Her speech therapy session was interesting today as I was able to watch Nea's 2 y/o-ness vs her Autism.  She was whiney at times with Diana, but without a doubt it was a total fake.  She even shot Diana a couple grins along the way!  Oh, whatever, child!  She was also able to do some computer work today.  I love this picture so much because I love how comfortable she is with Diana.

Overall on this brisk fall morning, we had a good day at therapy.  Progress is still being made, success is still at our fingertips.

The MRI Day

I can never express enough how grateful I am for the people in Nea's life.  We have been so blessed to have come across such amazing people who work tirelessly for her.  I know people say things like "you're an amazing Mama" and "what a great parent" and I appreciate the compliments.  However, I'm just Mom and I do the things I do because I love my daughter unconditionally. But there are real heroes in my child's life, and for that I have not enough words of thanks.

It's an interesting set of fear and emotions when your child is undergoing some sort of high risk procedure.  It's even more interesting when that procedure is done at the place you work every single day.  And it really is extraordinarily interesting when said procedure will be done in the department you work in and the people you work with side by side.

Believe me, I was scared.

I wasn't scared of the team.  I trusted the doctor, the nurses, the child life specialist,  the MRI techs, etc. in the whole process.  The problem is I knew too much and it was hard stopping my mind from jumping from A to Z.  The bottom line is we make sedation procedures very safe.  We monitor children very closely.  We have lots of expertise, knowledge and emergency training.  We put safeguards in place constantly.  But, things can still happen. Just because we read "the book", doesn't mean the kids do.

Nea's OT worked us in for an early therapy session prior to the MRI.  She put her in the swing, she put her in the ball pit, she pulled her around on the scooter.  Nea was very chilled by the time we left.  She also was hungry!  However, she couldn't have anything to eat and drink until her sedation procedure was over.

So what do you do with a hungry 2 y/o who you can't feed and you have 90 min to kill?

You take her to the park!!

When you take your kid to a hospital that focuses on kids....it makes all the difference.  When we were in the waiting room, the receptionist gave Nea a purple backpack of fun stuff like crayons, hand shakers, coloring books, etc.  It was the perfect distraction while I filled out paperwork!

Waiting to do the MRI

One of the kiddos that had just had his test done and now awake, came into the room with his parents.  He was really upset and crying.  Nea stopped her coloring and looked at him for a long while.  I explained to her that he was really sad but his Mamma and Poppa were helping him feel better.  She kept watching and finally said..."uhmm...its okay"

Wow.

We were taken to the prep room where Nea was checked over, vital signs done (she did great!), and the doc came to talk to me.  Admittedly, it's really kinda funny because the doc and I work closely together all the time and teach families about procedural sedation.  I let her off the hook and told her I didn't need the full 20min lesson. :-)

Versed is a great drug.  It makes you sleepy, pretty loopy and downright happy to be on the planet.  It also has an amazing side effect of amnesia.  So even if things became unpleasant for Nea, she would never remember.  Why is that important?  It's important (and not just for her, but for every kid) that she is able to build positive experiences.  It's important that she has a trusting relationship with medical staff and that she not fear them.  We CAN make things pleasant for kids, and it's the right thing to do.  We have numbing lotion for IV starts, we let Mom or Dad hold a kid during an IV start or even putting in a catheter.  We can do some pretty cool stuff for kids, so that they have positive experiences.

Enter the Child Life Specialist.

It's an amazing profession.  Google it and understand who these people are and what they do.  In short, they make sure that kids are allowed to be kids and they are not overwhelmed.  They advocate for them so they minimize pain and fear.  They teach kids about their diagnosis in a language they understand.  And they make sure that trust is built.

Nea's IV was started relatively easily, and she went with one of the nurses to the MRI suite.  No tears, no fear, just snuggled right into her as she carried her into the room.  (Thanks Versed!).

I slipped back into the waiting room while they began sedating her.  I'm told she did well, no problems with sedation and went right to sleep.  The Child Life Specialist even told me, "She sighed deeply.....and drifted off."  My guess is that as the medication hit her system, it probably made her feel very heavy and that probably felt very good to her.

The scan was completed in an hour.  The Child Life Specialist and I had come up with a plan for waking up so that it was not scary and not stressful.  The bean bag, the weighted lead apron on her waist and legs, her own special blankie, and her paci.'s (one to chew and one to hold).

She woke up like no kid I've ever seen.  It was like she was waking up from a really nice nap.

Bean bag with lead apron

So, in recap Nea's day looked  like this to her......

"I saw my friend "A" and her cool play toys.  I went to the park for some fun with Mamma.  I met new people at Mamma's work.  The nice lady let me play with her iPad (must tell Poppa about that new app.).  The other nice lady let me snuggle with her (I was kinda sleepy).  I took a long nap.  I was able to get a wagon ride.  We came home and I ate fries."

Ernie was "the chosen one" for this experience

It was an amazing day.

Sometimes Mr. Sandman's Name is "Versed"

I swear, I love to write in this blog, but jeepers life is just throwing me all kinds of curve balls these past couple of weeks.  One of my recent facebook statuses was simply, "Pray for a boring life."

In a brief recap (because it appears I missed last week all together!), therapy sessions were not that hot.  Nea had a late night wake up/party on Tuesday night and she slept through Wednesday's OT appointment. If you are reading this and have a kid on the spectrum with SPD (sensory processing disorder) you understand all of this.  If you are reading this and you think the sleep issue is not really an issue, I invite you to spend a week at our house.

So because she missed OT, she really wasn't super prepared for Speech Therapy.   It was a quick lesson in how important OT plays in her life and how it allows her to focus.  So much of the time spent in speech was with Nea fussing, crying, arching her back, slamming her hand on the table, and screaming.  It wasn't pretty.  Finally Diana just scooped her up and held her to try and settle her.  Eventually, the session just ended early because Nea was in such a state. Developmental therapy at home a couple days later wasn't that great either, as Nea just fell asleep in the middle of the session.

The sleep thing is a real issue.  Getting to sleep is one thing, staying asleep is another.  Nea is not a neurotypical kid, her neuro system doesn't work the same.  Sleep cycles are often interrupted, it's a constant balancing act her Poppa and I try to figure out.  Work her hard, play her hard and hopefully she'll sleep hard.  However, that backfires sometimes and she's so over-exhausted that her body seems to wake her up more.  It's a never ending cycle we try to figure out.

We just ordered her a weighted blanket as we are hearing good results from other parents.  The blanket provides constant sensory input to her brain which allows it to relax....and stay relaxed.

And then we were handed a whole new set of challenges.

I won't go into a lot of detail here regarding this most recent diagnosis.  Mostly because I plan for Nea to read this one day and I'm afraid she might be mortified if I disclosed a bunch of information.  The short story is that it seems Nea is entering puberty and we have to figure out why.

Last Spring when I noticed a few signs, I discussed with her pediatrician.  She sent us on to the pediatric endocrinologist.  The endocrinologist did some prelim lab work and a bone scan.  All turned out to be okay.  She told us to stop using lavender products.  (Ack!  We had soap, lotion, shampoo, the works!) and to follow up in 3-4 months.  We did the follow up last week and some symptoms had disappeared, but some were still present.  So the doctor admitted as an outpatient last Friday for Leuprolide stimulation testing.  She received an injection of a hormone and then she had lab draws every hour for 3 hours.

It was a long day, to say the least.

The results came back showing that it looks like her pituitary gland is trying to "turn on" and secreting hormones inappropriately.  Perhaps there is something aggravating the gland and the doctor wants to see what the pituitary gland looks like.

MRI, with sedation.

The process is she gets checked in, she gets an oral sleepy medicine, she's taken to a treatment room for an IV start, she's taken to the MRI suite where they will sedate her fully.  She's monitored by a nurse and a physician through the entire MRI study.

This is what I do every day, sedate kids for procedures.  And I've watched many neurotypical kids struggle with sedation.  Once the drugs are given, I describe it as "going down the rabbit hole."  It can be scary, pretty freaky and downright awful.  And coming "up from the rabbit hole" is sometimes just as confusing and scary.  Now, imagine that X 10.

I've tried to put as many parameters in place as possible for a successful day tomorrow.  I spoke at length with the Child Life Specialist about ideas of toys she likes for distractions.  I brainstormed ideas with "A" her OT as well and we came up with a plan....
1)  OT session the same morning as the MRI  to get her grounded and relaxed (she worked us in)
2)  Use of weights during the IV start as well as when going to sleep.
3)  Put her in the bean bag chair in recovery so she wakes up in it, as well as using a weighted cover on her legs.

I'm hoping that these things allow for a smooth experience and a smooth sedation process.  Sometimes autistic kids don't sedate easily and they have to have anesthesia anyway.  I would rather avoid that if we can and stick with the sedation.

Send us some love and prayers tomorrow!  We'll take them!

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.

Nea's Workin' Wednesdays!

What an awesome day in therapy today!!  "A" put Nea on lots of bouncing balls of different shapes and sizes.  Honestly, Nea wasn't having any of that.  She wasn't super thrilled with it, but tolerated it and hung on to "A"'s blanket snugged right up to her for a little bit of comfort.  Even as "un-thrilled" as she was with that ball bouncing, she never came to me (sitting in the corner) for reassurance.  That's a big step for Nea, because usually in OT there's just so much going on and so much overloading of her nervous system, that she comes to me  several times and asks for the paci.  And usually she's got a horrified look on her face!  Today was much better and I think she's relationship building with "A".  She also did great eye contact, which really impressed the heck out of both of us!

We then moved to the ball pit.  Did I ever talk about the ball pit before?  This thing was Nea's nemesis during her OT eval.  She screamed and arched and essentially had a total meltdown when she was in the ball pit.  "A" got in with her, and began covering her with the balls.  Nea cooed, purred and buried her face down in them. The more balls she was covered with, the more content she seemed.  It must have been like a beanbag chair X1000!

Look at that big smile!! AND she's smiling at "A"!

Jumping with help!

This might not look like a big deal, but trust me, it really is.  A ball pit can awaken the senses or calm them down, depending on the kid.  For Nea,  it helps her neuro system sorta reorganize itself.  A ball pit is visually stimulating, requires her to use her core to climb out of it and feels realllly good to her!  We may see if Santa has a ball pit around the North Pole and get a smaller version that can be set up in her room!

After the ball pit, it was time for even more relaxation (remember, we're trying to get ready for Speech therapy too....which is right after OT.  This girls dance card is busy on Wednesday's!).

Ahhh, the scooter, with the beanbag, with the LadyBug squish blanket on top.  She did 3 laps and was a very happy camper.  This is one of those sensory integration things and quite honestly, I don't have all the reasons down as to why this works so well for her.

After the ball pit, and the beanbag/scooter ride, Nea was ready for this.....

That's right folks!!  A tricycle!!  Oh my gosh, my little girl is on a tricycle!!!  Now it's a very special kind that her feet get velcroed onto the pedals, there is a safety strap on the seat and the handlebars pedal as well.  She figured it out, all on her own.  She did 3 laps around the gym with a smile on her face and I'm pretty sure a song in her heart.  The coordination was phenomenal!  "A" was impressed.  Very impressed!  She was so impressed with how well she did with it, that she is requesting one for Nea.  These trykes are very expensive (think $500.00!) and the company tries to find a sponsor who will get the tryke for the child.  We have to send in a picture and "all about me" info sheet.  It's a wonderful opportunity and we hope to get a tryke soon!

Speech therapy went just as well!  She's really beginning to grasp the art of communication and understanding how communicating can gain her benefits.  Children with Autism are not motivated or influenced by social rewards.  Finding a motivator for communication is key so that then we can teach her words and sentences by things she chooses, not just something we choose for her.  If I've learned nothing else, it's how complex language really is!

We hope to incorporate the PECS  (Picture Exchange Communication System) and "D" is pulling together the words boards while her Poppa and I try to understand the system and how it works exactly.  It's a learning process for everyone!

Part of the ritual of going to therapy at Pedi Rehab is heading to Jamba Juice when we're all done.  We've been doing it since day one and she just believes its just part of the whole thing.  It works well I think because we can work on a few social things while we sit in there.  Kids and grown-ups come in there a lot, so we work on saying "Hi, friend" to everyone that walks in the door.  So far, she still hides her eyes or turns her back, but we keep working!

Strawberries Wild at Jambe Juice!