The Blank Places

I try to do updates on the facebook page regarding Nea's progress as much as possible.  So if I'm behind blogging, I try to be sure to put updates there!  I have been out of commission for the last 6 weeks due to finishing school,  surgery, and not having the ability to sit at my computer for a long blog post.  Thanks for your patience!!


We just completed Nea's new IEP.  I went to that meeting by myself.  Her Poppa was very sick and the other therapists couldn't make it.  It really was a wonderful meeting as we shared information and there were no surprises.  What they see at school is what we see at home, every day.  Nea's new IEP has some good goals starting the 4th quarter of this school year.  It's been exciting to see the changes in her progress and we are ready to continue on!  The major issues continue to be social, fine motor and language.  In fact, we decided to increase her speech therapy sessions to 90 min a week from 60 min.  I think that's a very positive thing for her.  OT in the school will now be 30 min a week.  She has group OT in the sensory room (swings, ball pits, yoga, fine motor play, etc.) .    She still gets private OT and we started a weekly OT project at home as well to help meet her fine motor skills.  Overall, I felt that was a balanced OT and Speech program for her.  So her weekly schedule looks like this:

Speech therapy- 2 1/2 hrs
OT-90 minutes
School (social/academic)-10.5 hours

That's a whole lot for one little 4 year old!  Which brings me to my next topic.....

Nea has an ongoing issue with dry skin.  Not just dry skin, but severe "I swear I just put lotion on you 10 minutes ago" dry skin.  I finally got her in to see a pediatric dermatologist.  He's an amazing guy, very good in his field, highly recommended and a total perfect pedi doctor.  I've worked with him professionally as well, and found him to be just as wonderful from a nursing perspective.

When he came into the room, Nea did her usual hide under the chair, whimper a bit and avoid eye contact.  He said hello, and then turned his attention to me as we reviewed her history.  Nea finally came out of her hiding spot and crawled up into my lap, but buried her face into my neck.  He was able to touch her and examine her skin and determined that she has ichythosis vulgaris.  It's a genetic mutation that means her skin doesn't lock in moisture.  He gave us great ways to deal with the issue (bath every 1-2 days, special creams, etc.) and said all would be well.  Nea was still buried in my neck and I said to him, "I'm not sure if your staff explained, but she has Autism."  He looked at her quizzically and replied, "Oh, she may be a bit on the spectrum, but I don't know about having Autism....."

My heart sank.  Please don't misunderstand.  I LOVE this doctor.  But it is a startling reminder how far my medical peers have to go in understanding what being on the spectrum actually means.  I smiled sweetly and said, "No, actually she's been to a developmental pediatrician and a team of therapists.  She in fact does have Autism.  What you are seeing here is a year's worth of intense therapy and continued weekly sessions. She's made tons of progress."

The CDC just came out with new stats today.  Since the last scientific study, Autism has increased from 1 in 88 children to 1 in 68.  That's quite an increase in such a short time.  My major hope is that people understand that it's on a spectrum and there's no way you can "fit" someone into a definition of what Autism looks like.  If I do nothing else important in my lifetime, it's my hope to help facilitate a change in this understanding.

The article I read today said:

"Notably, the new report found that most children tend to be diagnosed after age 4, despite advances that have made it possible for diagnosis to happen as early as age 2.   That figure suggests that too many children are "missing out on the transformative benefits on outcomes that early intervention offers, " Ring said.  "Earlier diagnosis has got to be a priority."

Wow.  After age 4.  I can't imagine where we would be if Nea would JUST be getting diagnosed.  The science is showing that early intervention gives the brain an opportunity to "rewire" itself.  They have determined there are layers in the brain of an Autistic child that were laid down incorrectly in-utero. That means that somehow there was a genetic misfire as the brain was developing and laid down the bricks to the brain incorrectly in a certain spot.   It just so happens that this spot in the brain is responsible for social understanding and language development.

Therapies have been crucial to Nea's success and they started just weeks after her 2nd birthday.  If you are reading this and you have a child on the spectrum who was diagnosed after 4, this is NOT an attack on you in any way.  We all do the best with the information we have been provided.  In 3-5 years there is going to be information out there that I wish I would know right now, TODAY, so that I could help Nea.  The point of this is that information is power.  Information changes outcomes.  The more informed you are, the better decisions you make.  That's true in many things in our lives.  If you are reading this and you have a family member or have a friend who may have a child on the spectrum...REACH OUT.  Get them to an information site.  Autism Speaks provides a link to an online quiz that walks a parent through development.  At the end of the quiz, they give helpful ideas of what to do with the information.  Please, pass this on to anyone who might need it!

We still do not have a cause for Autism, which means we also do not have a cure.  Neither one of those facts bothers me, but I know it is maddening to some.  I try very hard to live my life in the "now" and finding the answers to those questions doesn't really help us "now".  It doesn't provide a guideline for how we should proceed "now".   Personally, I'm not waiting around to find the answers.  We are going to continue forward with how we know right NOW to help Nea.

If Autism is now 1 in 68 then everyone (parents of NT kids, educators, physicians, nurses, allied health staff, social workers, therapists, etc.) should be getting up to snuff on how a child they come in contact may be affected.  You are more likely to come in contact with, work with, be part of the life of an Autistic kid now....more than ever.

*stepping off soap box*






A recent speech therapy session with Diana had her on the phone to me that same day. (I'm still not able to take Nea to therapy sessions, the walk from the lot to the door is too much right now).    Diana has been with Nea since day one and knows her very well.  Apparently, during the session Nea started pointing to the cabinet in the room and the conversation went like this....

Diana: What do you want, Nea?
Nea:  Dora, inside.
Diana:  Yes, Dora is inside the cabinet.
Nea:  Too high
Diana:  I'm not sure how high she is actually.
Nea:  Can't reach
Diana: Ok
Nea:  Diana, you reach
Diana:  What do you want?
Nea:  inside, open

.....and on and on and on went this circular conversation.  Diana knew exactly what Nea was trying to say, "I want the Dora toy, can you get it out for me."  Certainly, most 4 year olds can easily have that conversation but she struggled the entire time.  Interestingly enough, when she was doing some pretend play, she had very distinct back and forth conversations with characters she was playing with as she spoke for both of them.  So why did the speech therapist call me?  Because we have to strongly encourage her to find the words she wants, instead of getting by with the "gist" of the need.  Admittedly, we are not great at this.  Life happens, and in the interest of getting dinner on the table, or corralling her into the car....I can usually fill in the blanks and figure out what she needs.

But the blanks are the important part.  It's the blanks that are the "art" of conversation.  Those blanks keep her engaged with peers and allow her more opportunity to fit in, rather than stand out in an odd way.  In short, the blanks have to be filled in by her...not us.

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

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

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

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

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

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

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

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

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

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

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

Okay, back to today.

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

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

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

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

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

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

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

Can you understand me? Jargon 101

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

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

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

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

One on One at school with OT

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

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

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

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

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

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

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

Working on fine motor skills

Water table with a friend

The practice of Self Care

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

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

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

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

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

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

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


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

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

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

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

"All Aboard!!!"

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

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

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

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

"I thought pre-school was not like school"

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

"School?  What school?"

Effective  ice cream eating

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

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......

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.

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 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!

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!