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?!