"This is a real school."

This phrase was spoken by the principal at Nea's new school.  And it has stuck with me all day.

We had our parent orientation/open house last evening and I loved every second of it!  First let me take you back half a step and remind you how we went from A to B.

When Nea turned 3 in March, she aged out of the Early Intervention program.  They provided developmental therapy for her as well as Speech and OT.  However, those services ended when she turned 3 and they turned her over to the school district.  (We elected at this time to maintain private OT and Speech services so that she did not regress too much over the summer.) The school district placed her in a satellite classroom for special needs kids.  Teacher/student ratio is 1:10 in a special needs room, along with an assistant.  They had to place her where they had an opening.  The satellite classroom was in one of the local elementary schools on the OPPOSITE side of town.  Thus, her 50 min bus ride to and from school.

Nea had an amazing 8 weeks at school and she had a wonderful teacher.  Nea and I both learned so much and I am forever grateful for Nea's first experience in the school system to be such a fantastic one.  I knew she would probably get placed in our early learning center when the fall semester started and I was alright with that.  As much as I didn't want to lose the teacher, I also needed to get Nea off that 50 min bus ride.  I also wanted an environment that didn't include 3rd and 4th graders.  They looked HUGE compared to this little group of 3 and 4 year old special needs kiddos.  Again, I want to reiterate, we had a great experience!

Indeed, Nea was placed in the district's early learning center.  This school focuses on early childhood education and there are only 3,4, and 5 year olds at the school.  The environment is very different and has an early childhood focus.  Our early learning center is accredited by the National Association for the Education of Young Children.....which I think is pretty darn impressive.  You know I did my research, and the standards that they have to prove they accomplish are pretty impressive.  Major kudos to our district for creating this center 9 years ago and putting much thought into its growth so it provides quality education to our community.

We didn't tell Nea where we were going until we arrived.  If we would have talked about "school" and "teacher" she would have used her previous understandings, which were not going to be true.  I wanted her to understand as she was standing right in the building when I said, "THIS is where you go to school." and when I introduced her to her new teacher, "THIS is Mrs. K, she is the teacher."

Prior to our open house I sent the following email to the teacher.  This was a great idea I learned online and the teacher replied with how grateful she was to get the info!  I provide it here in case any other parent wants to copy the format or things I included.

My daughter, Antonea (Nea)  will be in your afternoon class this school year.  You and I met briefly at registration and I wanted to say hello and pass along some info for you.  I think IEP's are wonderful, but I also believe the day-to-day information needed is just not in them.  :-)  First, let me say that I appreciate all the information on the website!  Thank you for helping to getting us organized to start a new school year!  Nea attended XX for 8 weeks last Spring and did really well.  She made lots of progress and we tried to keep momentum over the summer.  Initially it seemed she slid back a bit in communication, but I think she is back on track.  I'm going to try and be brief but organized :-)
Background: By the time Nea turned 2 her vocabulary went from 100 words to 10.  She had extreme "shyness" with strangers and many repetitive behaviors.   She was diagnosed with Autism at the age of 2 after spending a verrrry long day at Cardinal Glennon in St. Louis.  She immediately started receiving OT, DT, and Speech therapy along with swim class.  The girl did 6 hours of therapy a week through Early Intervention services and she made great strides.  DT stopped when she turned 3.
This past year:  We decided to keep Speech and OT through rehab and have maintained it through the summer.  The Speech Therapist elected to "graduate" her when she starts school.  She felt that her language skills were good, she just needed more pragmatic use with peers.    I started noticing this summer that she has had more phrasing and interactive language with us.  She is also doing more pretend play and lets me insert into her play from time to time.  Books are an interest, but still difficult for her to maintain focus.  (I'm looking forward to the weekly library book!!)
Strengths:  Nea knows all her letters and we have started working on sounds.  She can count to 14...but seems to get stuck there often.  She can do one-for-one counting with 3 objects occasionally.  She is very curious and likes to learn.  She does not give up easily!  She has the best facial expressions!
Weaknesses:  She has many OCD qualities and can get "stuck" on a subject or a toy.  She still enjoys lining things up and gets territorial when it seems another child is going to come into that particular play space.   She is also a hoarder and likes to collect things in a room and will often keep something in her hand.  She seems to have some anxiety with sharing but will often offer a "trade" so she can keep the toy she likes.   Instead of communicating her need, she often times uses my hand as her tool to get her need met.  She also tends to bolt when she is mad or fearful.
Enjoyed activities:  Nea loves anything physical....climbing, jumping, swinging, tricycle, etc.  She is a risk taker and will climb the highest point whenever she can.  She also loves water and always seeks it out.  She loves super-heroes (Spiderman, Ironman).  She also enjoys trains and tracks and likes to build these often.
Activities that are frustrating:  Social interactions.  She always needs a 5-10 minute warm-up time....even with someone she knows and loves.  If it's been a couple weeks since we've seen Grandma, the first hello is always tough.  Often she will run or hide behind something.  Finding words are often frustrating and she continues to use jargon speech a lot.  She believes she is communicating, but the words are not understandable.
Motivators:  Anything with wheels excite her.  Bugs and dinosaurs are also favorites.  It's hard for her to follow a "list" ....so "if you do X, you get Y" doesn't seem to work with her.   She also loves to be outside.  She has started to mirror activities, which has been nice to see.  She also loves to ride the school bus!
Self-Stimming behaviors:  She still uses a pacifier during stressful times, however we do not send it to school.  When she has them (usually 3 at a time....the hoarding thing) she flicks one on the underside of her nose.  That's her most frequent stim.  When she doesn't have a paci, then she usually will spin.  She's a sensory seeker, not avoider.  Noises, lights, etc. do not tend to bother her.
Goals:  We would like to get "up-down" "on-off" "yes-no" used appropriately.  She tends to interchange them often.   We still work on potty-training and hope to make more progress this year.  She still is not making the connection, but will use the potty often in the morning.  I would also like to see number recognition and sounds of letters.
This email address is the best one, and our phone numbers are listed on her info sheet.   She calls Jon and I "Poppa" and "Mamma" .....she does not really know the term "Daddy" (just a heads up on that one!).  
Buffy
(Nea's Mom)

When we arrived, we were greeted by a friend of a friend.  Her and I hadn't seen each other in years and I had no idea she worked there!  We hugged several times and tried to catch up in 2 min or less!  I'm not sure if it was Nea's observation of the hug or just the simple fact that this woman is so dang cool....but she walked right along with her when invited.

"Hey Nea, I have toys and trains down in the library, want to go see?"

"Sure!"  

.....and off they went hand in hand.

(You have to know this was a surreal moment for me.  Years ago when I struggled with infertility and miscarriages, she was so sweet and supportive.  And now, I was watching her walk down the hall with my 3 year old!)  

We went to the gym and listened to the principal talk about the school, the program, their philosophies and the importance of co-responsibility of our child's education.  I soaked in every word.  

Here's another thing she said that about blew my socks off. 

"Your child has only been on this Earth 1200 days.  3 year olds have only been around 1200 days.  So when we grow frustrated with them or maybe get angry....remember that they only have 1200 days of experiences in how to live in this world."

Yah, see....it knocked me over too!

Playing outside is not only important......it has a focus.  They refer to it as "outdoor learning"  and when you say it that way it has a whole new meaning!  They have a new outdoor music wall that they are creating that looks amazingly fun!  

example of outdoor music station

We then went down to meet Nea's teacher.  (Nea was still in the library with her newest friend!)  It just so happened there were no other parents at this session so we were able to have 1 on 1 time with the teacher AND with the speech therapist!  You could tell they had done their homework on their new student and I loved everything about them.  After our conversation was done, then Poppa went to retrieve Nea from the library.

Nea hid behind Poppa for a couple minutes but then walked around as if she owned the place.  Her energy level was HIGH, HIGH!  They were both able to witness her....

• jargon speech
• echolalia
• scream in frustration
• frequent Scarlett O'hara dramatic phrase of "No....I can't!"
• be lousy at transition
• identify animals and bugs on a poster
• pretend play with a puppet

Quiet corner for decompression if needed!

There simply was a whole lot happening in that 20 minutes she spent in her new classroom!  At one point Nea saw that the door was open, and she bolted out the door....running down the hall.  The assistant chased after her and came back saying, "Wow!  She was running like the gingerbread man, looking behind her every couple seconds!"  

Exercise bike in classroom

All and all, I think they all were able to witness what it means to have a Nea in the classroom! 

Sand angel in the park

Nea will be at this school for the next 2 years.  I am looking forward to her growth as well as my own!

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

Mom's Education

School is going well.  School is going REALLY well.  Reports from the teacher have been very positive.  I am loving the communication, the feedback and my own learning process of what it means to have a child in school.

Tuesday is "folder day".  That means that communications from the teacher, the principal, the school itself are put in the Nea's backpack for us.  Essentially grown-ups are using children as a messenger service.  It's brilliant!  Nea's classroom was out of Clorox wipes and a note was sent home in the backpack to all the students.    I put 2 tubs in Nea's backpack on Monday, patted her on the head and sent her to school.  When she came home, they were magically gone!  Listen, I don't mind sending cleaning wipes to school.  Kids are germ factories, I am fully aware of this (live it every day) and anything they are doing to keep that down to a minimum I am ALL FOR it!

Yesterday (Tuesday, folder day...remember!)  Nea came home with this...

Ohh Yeah!!!!  How exciting!  Of course we asked Nea about it and the conversation went something like this....

Me:  Nea!  Ms. **** gave you a special note!
Nea:  Yes, Mamma, I did it!
Me:  I see that!...what did you do?
Nea:  I did it!
Me:  I know!  Why did she give it to you?
Nea:  I did it!
(hmm...okay, this isn't working.... I have worked with enough Child Life Specialists in my career to know that rephrasing has to happen at this point.)
Me:  Nea, the special card that Ms. **** gave you, what's it mean?
Nea: Mamma, I got a B- a R-and a A- and a V and O!  I did it!
Me:  That's right!  You have a card that says Bravo!  It means you did a good job in school.
Nea:  I know Mamma, I did it!

I have to say, that was an awesome conversation to have with my girl.  I'm not sure she understood exactly why she had that very colorful card.  But clearly, however she received it made an impression on her that exudes excitement.

If you are on my fb page that connects to this blog, you've seen that there have been a few issues with the bus.  Now that has been the angst from the beginning and to have it go awry so soon is not setting well with me.  So in true fashion (as modeled very early to me by my own mother), I started out on my very first Harper Valley PTA quest.

I'm going to post the letter here.  Mostly because I want people to understand my thought process and if anyone needs to borrow my words to advocate for their own child, I'm okay with that as well.

First, when doing something like this, moving to Def-Con 5 at the outset does no one any favors.  I do believe that people want to do a good job/run a good business/are not out to get me.  So I operate initially on the "perhaps you just don't know."  If something else comes to light, if I discover there was malicious intent......well.... okay lets not go there today.

So I started with the teacher and the principal and then moved on to the director of special ed services.



My daughter, Antonea started school at **** Elementary on April 10th.   She is in Ms. **** special needs class.  Nea is autistic and going to school has been a source of anxiety for our family.

I am happy to report that her time at school has been fantastic.  Ms. **** has communicated with me frequently to let me know how Nea's transition to school has been.  All reports have been good, and Nea is learning the routine wonderfully.

What has not been going well however, is getting her to and from school.    We have had major inconsistencies regarding bus pick up and drop off for at least 3 days.  

The first day went very well, as well as the second.  But then for some reason on Friday, Monday and today we have had concerning issues.  We were told that the bus would pick her up at 11:30 and the ride would be an hour each way to and from school.  The bus has arrived anywhere from 11:25 to 11:50 and today it did not arrive until 12:28!  We were told that the bus was stuck in the mud today and that is why they were so late.  Nea arrived to school 50 minutes after the start time.  50 minutes is unacceptable to start school when you are only there 2.5 hours.  Every minute is crucial learning time, and I am less than pleased that she's missing out on much needed learning.  Also, I cannot imagine the disruption to the other students as she arrives so late.  

I understand that today may have been extenuating circumstances, however drop-off has been just as inconsistent.  One day it was 3:25, the next 3:45 and yesterday was 4:00 pm.   If the routes are different per day, we just need to know how that works so we can make accommodations accordingly.    As I'm sure you are aware, many autistic kids have difficulty with transitions, and Nea is no exception.  Waiting on the porch for 40-50 minutes with an autistic 3 year old always on "the ready" to get on the bus is impossible.  Because we do not know the arrival time of the bus (or within a 10 min window), the transition has to happen far too quickly and then we are putting a stressed-out special needs preschooler on a bus with no coping mechanisms available to her.  

I have already been in contact with Ms. **** about my concern and she informs me that she has discussed with the principal as well.   They have been in contact with the bus company directly.  I am writing you to inform you as well.  I would appreciate any assistance you can provide on this matter.

Please feel free to contact me by phone  or email if you have any questions and I am happy to discuss further.

Thank you 


There was a reply this am, as I knew there would be.  They were aware of the issue, concerned as I was and would be handling it quickly.  Again, I believe that all to be true and I think a resolution can easily happen.  Again, I think everyone is doing the best with what they have and if the system has fallen short then lets work together to get it fixed.

As luck would have it, today is not a bus riding day for Nea.  Today is the day that I drop her off and pick her up from school.  Drop off is no biggie, there is hardly anyone in the parking lot and Nea and I happily skip to the front door as I hand her to Ms. ****.  Nea is happy to see her and she holds her hand walking into the school but doesn't want to let go of mine quite yet.

 I'm introduced to the OT who is working with Nea.  We walk and talk.  I am such a poor walker and talker.  Plus I'm also worried if Nea is going to let go of my hand at all or if there is going to be some sort of issue.   The OT explains (I think...my memory is fuzzy here.  Lots of kids in the hall!) that Nea is doing well and she's impressed with her mature grasps and how well she cuts with scissors.  [Note to self:  send Johanna a 'thank you' for teaching her how to cut with scissors.  Nea has also successfully opened a box of fruit snacks and snipped all 14 packages open, helping herself to a fruit snack breakfast one morning.]  I say to the OT lady, "Yes, she's been working hard......"  It sounded much better than..."Yes, my girl is a ninja sometimes and sneaks scissors to randomly cut objects"

As we moved down the hall Nea says "I have to see the bish"  (her word for fish) and I'm thinking "what is she talking about???"   Sure enough, Ms. **** stops at the fish tank in the hall, Nea counts all the fish and then off to the classroom they go.  This is the ritual they have created and I love it.  Ritual helps Nea feel comfortable and what a perfect thing to do when you get off a long bus ride!

As low-key as that drop off is....pick-up is the extreme opposite!

There's a line.  There's a line that moves in a certain way, in a certain manner, at a certain speed.  The bell rings and kids start pouring out of the school.  What, there's a door there?  Where's my kid?  How many kids go to this school?  Is that a 2nd grader, they look huge!??  I'm getting a little nervous because I do not know how this process really works and I'm thinking I need a good flow chart to understand it all!  The other parents look like veterans in the "Pick Your Kid Up Efficiently While Maintaining Your Sanity" process. I finally decide my car is a hindrance here and I slide into a parking spot.  I think I might have zagged a little bit into that space which got me a glare from Soccer Mom because clearly I have no clue what I'm doing. Screw this, I'm walking through this circle drive!

I make it to the doors of the school where Nea and Ms. **** greet me with a smile.  I give a haphazard grin and look back across the mine field of children, buses and cars.

Crikey!

Climbing

I was asked to speak at an event on Friday night that was a fundraiser for the pediatrics rehab department at our local Children's Hospital.  Nea was asked to ride her bike to help raise awareness of all the great things some of these partnering organizations do for kids.  We sat court-side, and Nea seemed to be really excited to be in the middle of the action.  She kept her eye on the ball most of the time, but after the 1st quarter she was getting ancy so we had to keep moving!  

We made it to half-time and Nea did pretty well.  She had her fingers in her ears often, so the sound must have been constant and loud enough it started to bug her.  When half-time came,  we loaded her up on her bike and she booked it across that gymnasium floor!  

I was asked to speak about what therapies have meant to us and how it has helped our family.  Do I remember what I said?  Not a word.  I tend not to write speeches like that, but rather say them from a real a place as possible.   But when I do, I cannot remember a word I said.  It's like my brain disconnects and my mouth just starts speaking.  I know the sentiment had much to do with how our life changed, how Diana encouraged us to get her formally tested, how their support was invaluable and could never be described in words, and how they gave us our daughter back.

That part I remember clearly.  Because the reality of that part is still etched in my heart.

We knew that by the time we took her to the pediatrician and words were disappearing that we were in trouble.  And we knew that she avoided people so strongly, that even Grandma was having a hard time getting in that she was starting to disappear into herself.  We knew that if we didn't get her help soon, we may lose the one window we had to reach in and grab ahold.

Speaking at event (creative face blocking added by me)

The message I was trying to convey is what science has spent a lot of time and money proving.  The earlier kids with Autism are identified and therapies started, the better the outcomes.  Its intense therapy for many hours a week, but it changes brain function!   What we have spent the last year doing is understanding and working with this thing called Autism.  Sometimes I've been pleasantly surprised, sometimes I've been lead down the primrose path and sometimes I've been completely snowballed.  By the time Nea is old enough to start asking questions about her Autism and what it means to her, I hope I have an arsenal of information to hand to her.

When we were at the park today, I kept thinking about where we were just a year ago.  A child that couldn't talk or express herself.  Days and days worth of meltdowns because of frustrations with communication.  Poor sleeping patterns.  Frequent stimming with hand flapping and head bobbing.  She still has some of these issues, but they are not as pronounced AND we know what to do with them now.  It's been a year of growth.  I'm no expert, but I'm an expert where my daughter is concerned.  So, in pictures .....here's how far we have come....

A mature pencil hold.  It may seem like nothing, but being able to hold a crayon/pencil/pen correctly now will save her tons of frustration as she begins to learn how to write.  OT works long and hard with her to help her get used to textures and participate in "usual kid stuff".  If Nea is paralyzed by these things, she will not keep up with her peers.

Shared interests.  Do you realize that she wouldn't point to objects so that we could share an experience together?  That's a significant milestone and one that evaluators look at closely.   If she stays in her space and never draws me in....it will be more and more difficult to keep her engaged with the world around her.  This was a significant delay for her (almost 30% delay) and she's come a long way with it!  Johanna (the DT) spent hours and hours and hours figuring out how to engage Nea, keep her engaged and teach her how to share a conversation with someone else.  

Showing me a bug she captured!

Upper body strength.  The girl would fall on her face.  A lot.  She had no core, no upper body to move her through a tunnel or keep balance if she needed.  Again, OT played a huge role her in helping her gain more control of her body and start to feel comfortable with it in time and space.  Doesn't she look like such a big girl in this picture?  

Gross motor.  She didn't really have many gross motor delays.  But what she did have was the poor coordination factor.  Incorporating gross motor and fine motor together to do something like climb a rock wall takes focus and persistence.  She fell off this rock several times.  There was no meltdown or frustration or head-butting.  There was only her saying, "try again!"  (It must be a phrase she hears a lot in OT)

I'm telling these stories for 2 reasons.

1) Because some days the mountain seems so overwhelming I can hardly stand it, and this is a good reminder that what I think is impossible today....may not be impossible tomorrow.

2)  Because other moms, dads, grandparents, friends, families need to understand and find value in early intervention.

I'm not trying to toot my horn.  (my horn is broken, has been for awhile)  I am trying to advocate for kids.  Listen, we didn't make these huge strides by ourselves.  We had help.  We had HUGE PROFESSIONAL help.   And if you know a kid who might be on the spectrum, or has any developmental delay, please...get them into an Early Intervention program.  (age 0-3) You can find details for your particular state.

Everyone needs help to climb a mountain.

Or a rock wall.

The IEP

First, I have to say again that my Mom made this day infinitely better for us.  She brought us all lunch, did some pre-meeting prep with us and then stayed with Nea all day.  I've said it before....no one loves your kid like you do.  But Grandma, is a pretty close second.  Reports from Grandma are that they had a great day together and learned a lot about each other without the pesky parents around.  There are decorative gel eggs on our windows now and we are +10 mini dinosaurs, a tiara, Nutella dip-sticks and +4 cars.  As Grandmas go.....ours is at the top of the list.

Second, I have to give a major shout out to all of Nea's current therapists.  Every one of them came to the meeting today and spent 2 hours totally engaged.  (Yes, it was a 2 hour meeting.)  If they had not been there, I am certain the IEP would have been very different.  And because Nea's made some great strides in progress since the initial evaluation by the school, they were able to provide that info as well.  Without her therapists today, I don't believe we would have made all the progress that we did.

Okay...on with the info!

Just a recap. The IEP is Nea's individualized education plan.  The school shares their recommendations of what she will need to accomplish education goals and how they are going to go about helping her along the way.  It's stressful for many parents, and I can certainly understand why.

We walked into a board room with a table full of professionals on their computers or reading through reports, etc.  It could have been very intimidating.  Very.  But I had 4 other people with me, so it felt a whole lot better.  I also made a mental note to myself that Jon and I would NEVER be coming to one of these by ourselves.  Even if we bring friends who may not know Nea's skills, her Poppa and I need the support.  Period.

 I  don't think they mean it to be intimidating.  I just think that the table doesn't serve well in that scenario.  The table was a long board room table, much like a rectangle.  That  gives it the impression of "head" and "foot" as well as "sides."  It's a Feng Sui disaster.  A perfectly round table, with enough seats for everyone would have been far less overwhelming and much more "we're all equals here because we all have important information."  The dynamics of a room play a big role here, in my opinion.

Okay, enough about that.  But if I win the lotto some day, I'm buying my school district the biggest round table I can find.

The meeting starts off with everyone in the room giving the results of their assessment.  There were not any surprises.  There were a few things she gained extra points on because our therapists were able to fill in a few gaps.   There was a lot of rescramble on reports to reflect new information.

Sensory issues came out loud and clear from the OT person.  And both OT's were able to converse in "OT speak" about stuff.  The school's OT talked about assessment day and that when Nea was very stressed and  overwhelmed she came to her and climbed on her lap.  She hugged the OT gal tightly, and the OT gal hugged her back, giving her a big squeeze.  She told us today that she's impressed with Nea's ability to know when she needs pressure-especially in an unfamiliar environment with a stranger.  We see that at home too when Nea will bring us her helmet to put on or she asks for "squishes."  Without her sensory needs being met, the education piece will not progress.

The other loud and clear message from everyone was "on her own terms."  Which means, Nea probably has the skill they are requesting (like matching, or labeling from a field of 2) but if she's not motivated by the task at hand, she shuts down.  She will close her eyes, cover her face, turn her head, etc. etc.  And it's damn near impossible to come back from that.  They all saw it, her therapists agreed that's exactly how she works and we see it at home as well.

The first thing to decide after all the information exchange is "what makes her qualify for services?"  There was not a batting of one eye and every single one of them said, "Autism."  It was a powerful statement for me for some reason.   Maybe it was the affirmation of 14 professionals in the room all agreeing that her Autism gets in the way of her learning.  The developmental pediatrician said those exact words when she was diagnosed back in August.

So after 2 hours of talking, reviewing, gaining understanding, etc. we landed on an IEP that I believe will work for the upcoming year.  Goals are made for 12 months, which I had to keep in mind because they seemed so dang lofty.  I will jot them here (as I was taking notes) because I don't have the final one in front of me.  So many corrections had to be made, that the corrected version will be sent in a day.

OT goals:

• ease in transitions
• work on imitation
• use visual schedule
• sensory strategies/sensory diet will be used daily

Speech/language goals

• able to use simple phrases to make requests (I want milk vs. milk)
• use of personal pronouns for requesting 
• able to follow verbal 2-step directions
• increased use of who/what questions that are conversationally appropriate

Classroom goals:

• able to easily transition 4 activities
• follows at least 1 teacher directed task

Social goals:

• turn-taking & sharing
• exchange toys with peers at least 4 times in play (Mom note:  bahahahaha!) 

Play goals:

• Create 3 step play schemes 
• Play with 10 different toys in an appropriate manner

Lots right?  Wowsa.  And that's just my notes!  

So....to meet those goals she's going to need:

• Special needs classroom (1 teacher/1 aide/10 students)
• Speech/language 60 minutes/week
• OT 30 min/week

Classroom is 2.5 hours a day/5 days a week.  

Reports are sent to us quarterly on goal achievement.  

Overall, her Poppa and I were happy with the outcome of the meeting.  If she meets these goals, then we all come together again, and come up with new goals.  If there is a slot open in a special needs classroom, she would start April 9th. 

I'm happy to have this very first IEP under our belt.  It's the first of many for her entire school career.  I think we all did pretty well.

  

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......

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!

The Crab

So, today is one of those days where the tears just sorta flow from time to time.

I know every parent has the "can I do this?" moments, but they really seemed to hit me today.

"What if I miss something, like some opportunity for her?"

"Can I make the right choices for her?"

"How do I not get swept up in the business of it all?"

"Am I starting in the right places?  Am I reading the right things?

"What happens on days she needs me the most, and I'm at my worst?"


Now, before anyone picks up the phone and calls me worried sick (Mom, this means you), I really am okay.  I'm just at that place where I think I have to "sit with it" for a little bit.  And I think for me, that's how I work through many things.  I suppose it's the Crab in me (my astrological sign is Cancer).  I pull myself into my hard, tough shell and protect all my squishy soft insides.  Sometimes I melt into myself...much like today.  But  it doesn't last long, and I don't wallow.  I just have to ride the waves and wait until I come out on the other beach.

Admittedly I may have overwhelmed myself today getting information.  I am in the process of joining the Autism Society of America-Central IL chapter.  The site is full of information and you can easily get lost in it.

I also started reviewing stuff for school (coming up in April) and I think THAT is what probably threw me over the edge.  There's all kinds of things to think about like IEP's (which would be Nea's education plan) and I cannot even begin to fathom her in a classroom environment.  I think what I really need to do, is go and watch a classroom.

Now the good news for me is that the Early Learning Center is just down the road, I've heard amazing things and I even know a teacher there as well as the principal.  (although the principal probably doesn't remember me at all).  I sat and reviewed their website, read all of last years newsletters and scanned through their therapists and teachers.  New therapists?  I can't imagine!  The thought of her going to school is just freaking me out!

The good news for us is that I am blessed to know a whole lot of teachers.  I mean a WHOLE lot.  (Hi Meg, Heather, Liz, Stacey, Kristinah, Kathy, Shelly, Barb, Heather2, Mimi) And I know a lot of folks who specialize in childhood development ( Hi Vanessa, Ann, Dana).  Everyone has sent me a note of encouragement and support.  Truly we are surrounded by amazing people!  I just need to keep remembering that!

On one of the websites I read this quote that I really liked.....

"It takes a village to raise a child. And when the child has special needs, it sometimes takes a village, the neighboring village, and a tribe of warriors."  

Boy howdy!

And my biggest fear of all....

What if *I* limit her potential?  What if I end up being the biggest obstacle because of preconceived notions that I already bring to the table?  I really am trying to be acutely aware of that and make sure that I keep myself in check as we continue on this journey.

In other news.....

Nea's therapy was good today.  "J"'s note reads:

"Nea did so well talking today!  Even attempted to repeat some word combinations (teddy bear, kitty cat, puppy dog, etc.).  Did great working with colors and animal sounds.  Very wound up/energetic today but still focused."  

Really?  Still focused??  That's amazing!  That makes me happy for her!

So...the girl had a great day....Momma was just hangin on.

I guess we keep the world in balance!