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.

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!

Therapy

.....is no joke.  Seriously, it's not for the timid.

Nea has therapy 4 hours a week.  That doesn't seem like much, but trust me when I tell you...that's a lot for a 2 year old.  We also have things we do at home....which means Nea is spending about 8 hours a week doing some sort of therapy or therapy play.  And just for added fun, we are sprinkling sensory integration in the mix of it all!

Let me bring you up to speed on this sensory perception issue that many (if not most) Autistic kids have.  Stanley Greenspan, author of the book The Challenging Child, describes sensory perception disorders in this way.....

"Imagine driving a car that isn't working well. When you step on the gas the car sometimes lurches forward and sometimes doesn't respond. When you blow the horn it sounds blaring. The brakes sometimes slow the car, but not always. The blinkers work occasionally, the steering is erratic, and the speedometer is inaccurate. You are engaged in a constant struggle to keep the car on the road, and it is difficult to concentrate on anything else." 

Now imagine trying to drive this car and someone is wanting you to practice speech!  Yah, okay that would be maddening.  We need to get this sensory thing under control so Nea can spend time with better concentration and better able to learn!

One of the first things that A did was try to get her on a beanbag chair.  Pffft....Nea flipped out.  Total meltdown city.  We went from "happy" to "DefCon 6" in like 20 sec.  I was shocked.  A beanbag chair? Seriously?  I went and bought one that very day!  We are working on this thing for sure!

And, she loves it now!  So what does it do?   The beanbag chair envelops her.....it provides sensory input to her, it calms her and relaxes her.   All those little beans provide thousands of little pressure points and allow her brain a few moments to think clearly (because it's not trying to stay on the road constantly).  Now she uses the beanbag chair as a crash pad.  When she's upset, when she's frustrated, when she can't find words....she will run, full throttle and fling herself face first into that bean bag chair.

It's funny, we must have picked up on subtle signs earlier...... Does anyone remember when I said this on facebook last year?

"We got Nea a dogbed, she kept trying to get in the one for the dogs, and we found she just sleeps better"  That dogbed had a sheepskin top....  She always slept very well on it! We were doing sensory integration and we didn't even know it!

Today in OT, it was all about balls.  "A" had probably 20 different balls and they each had a different texture.  Some were pokey, fuzzy, soft, tickley, squishy, etc.  "A" took a big yellow ball and squished it against Nea while Nea played on the floor.  At first Nea was very confused, and a bit startled.  But then I watched her melt into the floor as "A"" essentially gave her a massage running that big yellow ball up and down her body.  When A would stop, Nea would turn her head and pat towards her back....essentially asking for more.  "A" was super pleased.  Me, I just sat in the cornered baffled by it all!  The two of them had some sort of give and take thing going on that I was confuttled to understand!

OT people have the strangest toys.  They have the most intriguing and yet scary stuff.  "A's" room is full of swings, and textures and boxes and jump toys and everything in between.  So far after every session "A" pulls Nea and "D" (her speech therapist she loves) around on a scooter, with the beanbag chair on top of them.  Nea stresses at first....but eventually she gets into the rhythm of it all.  So she gets some sensory integration while working on her core (staying balanced on the scooter) in the safety of D's lap.

Needless to say we have all kinds of new balls at our house now!  The koosh ball was a BIG hit!  She buried her face in it several times, shaking and shivering as she was doing it.  The big orange ball (A's was yellow) was also a great thing.  She actually got on her tummy and rolled herself back and forth across the ball.  Hell, the girl knows what she's doing long before I can even figure it out!!



This weeks quirk:  Nea's perception of pain is not that great.  So I found her using my hairclips pinched on her skin.  OUUCH!  She was trying to get some sort of sensory input, but that is not going to work.  We'll have to find something else!

The girl who loved trains....

"....As moths go by and the child continues to remain silent, worried parents consult family,  friends and the pediatrician to receive automatic reassurances...
                    "Don't worry; he's just a late talker"
                    "Aunt Mary didn't speak until she was four"
                    "Einstein didn't talk until he was three."
                    "She'll speak when she's ready."
                    "Just give him time."
All too willing to believe their son or daughter is just a late talker and that sooner or later there will be an explosion of words, parents frequently and happily accept such well meaning counsel.  However, many parents-especially the mother-instinctively suspect there is something wrong."

                                           --from the book "The Late Talker:What to Do if Your Child Isn't Talking Yet"


These words were extremely validating to me.  I heard some of these same phrases when I started to express my concerns and worries.  I'm a 25 year veteran pediatric nurse.  I've been around thousands and thousands of  2y/o's and I know what they are supposed to sound like....late talker or not.

Finally, at Nea's 2 year well child check up I had a conversation with the pediatrician.  She didn't do an entire evaluation but based on the history I provided to her, she agreed a speech therapy evaluation was warranted.  My concerns were:

1)  Minimal vocalizations
2)  Loss of previously known words.
3)  Current vocabulary of less than 20 words-only 5 consistently (Should be at least 100 by this age)
4)  "Looks" for me instead of "calling" for me
5)  No singing or chanting
6)  Lack of interest in books
7) Does not point at objects

We met with a speech language pathologist (SLP) within 2 weeks.  She was absolutely amazing in connecting with Nea quickly.  Nea doesn't warm up to strangers easily (now I think it's because of fear of not being able to communicate), but Diana hooked her in very quickly.

She put Nea through a battery of evaluations.  Of course Nea only thought it was play time with Diana's fun new toys.  She tested out at 15 months for language/speech development.  Whoa.  15 months?!?!  That's 9 months behind...nearly an entire year of language development lost.  Receptive language was not an issue.  Understanding her world was not a problem.  However communicating in that world......

"Try to imagine not being able to say your own name, or not being able to tell your mother that you are hungry or in pain.  Imagine living in a world where you understand perfectly well what people are saying to you. You want to respond to them.  You know exactly what you want to say, but you simply don't have the voice to communicate."  ~~ from the book The Late Talker: What to Do If Your Child Isn't Talking Yet

Reading these words shook me to my core.  And certainly I shed a few tears.  I cannot imagine that level of frustration and I would imagine that many of us would not handle it well.  But there it was.  My bright, intelligent daughter could not express to anyone (including her parents) what her wants and needs were.

But she communicates in other ways.  She maintains great eye contact, she puts things in my hands that she wants me to pay attention to or help her with.  She smiles at me and her Poppa when she realizes we understood the point she was trying to get across.

Apraxia of speech is when you do not have the motor coordination to form words.  Speech is a very intricate system of your tongue, lips and palate all moving along together to form a word.  The idea in your head is there....but the transfer or the "map" is lost for the formation of the word.  My friend Niki (who has daughters with Apraxia of speech) says "think stroke victim...without the stroke"- which is really a good way to explain it to people.  They don't know what causes it in children.  But what they DO know is that early intervention is key.

We've had 2 speech therapy sessions and Nea's apraxia of speech is apparent.  The good news is that she has a lot of "jargon" that she says constantly....none of it intelligible, however.  But her mouth, lips and tongue move freely- essentially practicing.  She spent a lot of time in front of the mirror this week watching her face and lips as she "talked" her jargon.  Again, all good signs.  Some kids with apraxia have difficulty sticking their tongues out of their mouths.

Poppa and I have lots of work to do ourselves.  We have had to pick up sign language again.  We used it when she was about 7 months and stopped using it when she started talking.  But when she "fizzled" out or stalled in speech last fall we didn't pick it back up.  We should have.  So she has to relearn signs as well.  Signing will help her decrease frustration and give her a way to communicate her needs.

We are blessed to have very informative, well educated and well versed SLP's in this area.  Diana's one of the best and like I said...Nea has bonded well with her.  While waiting in the waiting room, Nea grew a bit anxious.  Diana opened the door and said, "Hi Nea....it's time to play" --while showing her the sign for play.  Nea hopped up and walked along right beside her.  For those of you who know my daughter...that's a bit shocking.  I don't know if it's because she feels Diana "gets" her, therefore she trusts her or if the toys are just too fun and she remembers!  Don't get me wrong, Diana frustrates her at times.  For instances, today when  Diana was trying to help her with words -like withholding a train to get Nea to say "choo-choo".   Nea just simply wanted that train in her hand, but Diana wouldn't let her have it right away and focused her attention to her mouth and lips.  Nea eventually just tossed her head back, yelled out (as if to say " #&ck this $hit!") and then got up from the chair to come over to me (sitting in the corner).  After a minute of reassurances, Nea went back to the chair on her own and began working with Diana again.  I find it all amazing to watch.

Waiting for her turn at Pedi Rehab

Today her new word was "blue".  Blue!  Can you believe that I almost burst into tears?  She also said, "go!" and "buh-bul!" (bubble) 3 words today (2 she already had, 1 she learned new) is great progress.  It will be slow, it will be tedious but her Poppa and I will not stop until we know she has all the tools she needs for success.



....and if she says Mama somewhere along the way....I'm not going to be sad about that.