Happy Birth-Day Ántonea Ellis!

Today is Nea's 3rd birthday!!  We are excited to spend the entire weekend at Grandma's house celebrating, having yummy cake, and egg hunting!!

Below are 2 posts I wrote surrounding Nea's birth.  The first  was written on March 23rd.....
___________________________________________________
Dear Miss Ántonea,It has come to our attention that the terms and conditions set upon for "pregnancy" have quickly come to close. You have been uncooperative thus far to make any efforts to emerge from your current dwelling. This current state of affairs was generously offered to us by your current landlord, hence forth known as The Auntie Brenda. 

The Auntie Brenda and her mate, henceforth known as Scott the Great Man, graciously agreed to care take you during this particular time of your life. Their offspring, known as Skylar the Sweetie, has also been integral in your care as you have progressed.

It should also be noted that vacating your current home situation would also bring much joy to the landlord as well as your parents, henceforth known as The Mommy & The Daddy. Mommy and Daddy do not have an infinite amount of patience, I am afraid. However, you will find that they have an infinite amount of love and we believe this to be a suitable trade.

Other interested parties include The Grandparents, as well as The Aunts,and The Uncles and very importantly, The Cousins. All have been anticipating your immediate departure from the current living situation. Mason, in particular is looking forward to not being at the bottom of Cousins List, he is happy to hand you the torch.

I must warn you Miss Ántonea, that steps are underway to assist your immediate eviction. We will allow you 5 days, and then we will take action. At the request of the Landlord, The Mommy and The Daddy a procedure known as induction will be placed upon you on Sunday March 28th. If you would like to make a statement directly before that date arrives, feel free to let us know in person.

Again, we are confident that a mutual agreement can be found on this matter. Might I suggest you follow the dark tunnel soon!
Fondly,
Buffy
The Mommy
__________________________________________________________________________ 

And this is the post describing Nea's birth written on April 5th...... (with pictures of the event added!)
_________________________________________________________________
Ántonea's arrival into the world was much anticipated by so many of us. Jon and I started with a blessing of wonderful friendship with Scott and Brenda and had the privilege to participate in an amazing journey with them. But I think I've come to realize that this just isn't our journey, because we took so many of you along the ride with us. 

The labor and delivery portion of this story is very sacred to all of us, so I will not share it here. Suffice it to say, that our families came together in ways I could not dare to dream. Spending time with Brenda while she labored is something I will always cherish. I've been with many of my friends when they gave birth to their babies and I'm always in awe of the whole thing. It doesn't matter if it's my baby, their baby, a stranger's baby....being in the presence of a woman while she is bringing life into this world is an honor. I am always changed by each and every birth.  Our friend Meg was part of this story too, and we were grateful for her love and patience that day.  

Jon, myself, my mom and my sister were all waiting in a room for Ántonea to be delivered to us. There was quite an electricity in the air. My sister was pacing, which I've never seen her do! Jon and I stood by the warmer, knowing that is where they would bring her first. As soon as the nurse stepped into the room with a bundle in a blanket I swear there was a light around that child. I couldn't see her face, her head or any part of her body...she was totally covered. But I could feel her, sense her, and had such an eager need to touch and connect with her. 

The nurse laid her on the warmer, and Tarra started immediately snapping photos. She got some awesome shots, which I am very grateful for! I could hear Mom crying....like we all knew she would. :-) Jon and I inspected Ántonea from her perfectly round head to her tiny sweet toes. We talked to her, touched her and began inhaling the scent of her. 

Mommy and Nea meet for the very first time.

I think new babies are amazing creatures. For me, in my experience, it's like all of that wonder and potential of a new life is all wrapped up in one ball of energy. And for those first few moments, that energy is surrounding the baby, becoming a part of her....and eventually absorbed by her never to be seen on the "outside" again. But for those precious, mesmerizing moments....we get to see with the human eye what love looks like.

Everyone was able to meet Nea then. Mom held her, Tarra held her, and of course Jon and I sat and held her for awhile. Her eyes were goopy, but she was awake and alert. 

Aunt Tarra and baby Nea

Poppa and baby Nea

Grandma and baby Nea

After our first nursing session

Babies have that golden 2-3 hours after birth before they fall into a deep sleep. It's the perfect time to breast-feed them....which is exactly what we did. After my mom and sister left, Jon and I were left alone with Nea and it was time to start our breastfeeding relationship.

Of course Nea knew exactly what she was doing....me...well, I knew what to do in theory, but really had to get good with the dexterity of it all! Nea was able to move to the breast by herself...no forceful latching on. She did it on her time table.....which was something I felt strongly about wanting. The "breast crawl" is a primitive instinct we are all born with and it's amazing to watch. That feeling is about 10-fold when you are participating in it!

Just for clarification, I have been inducing lactation for several months now. I have been pumping, and taking herbs that help with milk production. Right now, I do not have enough milk to sustain life but Nea and I use an SnS. An SnS is a bottle, that has a tiny tube that comes out of it. The tube is placed right next to my nipple. As Nea suckles at the breast, she gets milk from the tube. She has to use the same power and the same motion to get the milk from the tube, just as she would from my breast alone. We are blessed to have a great friend who is donating breastmilk to us. I may not ever make enough milk to sustain life, and if I don't that's okay. I have a supply of breastmilk and Nea and I can continue our breastfeeding relationship. Breastfeeding is more than just "feeding" at the breast....but mothering at the breast. For us, it was crucial to our bonding with each other. Parents via surrogacy or adoption do this type of breastfeeding all the time with great success. We are another success story as well!

After Nea's time breastfeeding, it was time for her first bath. Jon and I watched close as the bath was given, talking and touching her. I had plans to give her that first bath, but I was so exhausted by this time (20 hours no sleep) I didn't trust myself with a slippery baby! After the bath, she was dressed only in a diaper and laid on my bare chest for 2 hours. It was my own body temperature that warmed her back up. Words cannot describe what it felt like to have my child's heart beating right next to mine. It's a moment that changed me and how I looked at everything in the world from that moment on.

1st Bath

We only had to spend a day in the hospital even with her congenital heart defect. Nea was born with a VSD (Ventricular Septal Defect) and she had to have an ECHO/EKG that morning. We see a pediatric cardiologist for follow up. Nea's VSD is small, and hopefully will close on it's own. She won't need surgery, but may need medication. Time will tell, and we'll know more at about the 6 week mark. 

It's hard to believe that 2 1/2 weeks ago this baby girl was born. She is a cherub and a fiesty devil all in the same breath. :-) It is amazing to watch her change, learn about the world around her. Her Poppa and I fall in love with her every single day.

.....all of this I have, because a friend came to me with a crazy idea, perseverance to meet any obstacle and love that only few can know.

Brenda, Nea and Mommy

Blessed Be.

Saying Goodbye

I've said time and time again...the transition from EI is the hardest for parents, not for the kids.....

Once Nea is offically 3 years old, she "ages out" of Early Intervention Services.  She's been in EI for almost a full year and you've heard me say before that we have been blessed with 3 very awesome therapists in OT, Speech and DT (developmental therapy).

So what is developmental therapy?  (You know I'm going to put stories here, pictures, my raw emotions, struggles, triumphs,etc.  But I wouldn't be me if I didn't educate a little bit as well!)

Development Therapy focuses specifically on HOW a child is developing.  They don't address one particular area (like OT, PT or speech), but look at a  child from a global point of view.  They keep an eye on cognitive skills, language & communication, social-emotional skills, behaviors, gross and fine motor skills and self-help skills.  They take all the information from OT, Speech and any other specialists a child may have (PT, mental health, etc.) and puts it all together through PLAY.  You know the saying, "A child's work is Play" and a developmental therapist lives by this mantra.  A Child Life Specialist does as well!  DT's help kids learn how to stay engaged in play, socialize with peers appropriately, encourage emotional growth and increase communication skills.  A lot, right?

Nea's DT came to our house 2x a week.  You can imagine that over the course of a year, when you see someone 2x a week and do some pretty taxing mental work with them there is a bond that forms.

Nea was very resistant at first.  She didn't want to have to do work while she was at home.  Think about it.  You're lounging around your house, going about your business and your boss knocks on the door....

"Hello! Time to work!"

Huh? What?

Eventually Nea and the DT found a balance, a trusting relationship and she has been part of the reason Nea has made such great progress in such a short time.

So today was Nea's last time with Johanna, her developmental therapist.  Now of course Nea is oblivious to the fact that she won't be seeing Johanna 2x a week.  Ignorance is bliss there is no doubt.

Nea will be getting much of the same type of services that Johanna provided by going to school.  Spending time with peers, working on speech and language, looking globally at a child will be incorporated in her academic career.  That's what that IEP was all about!

And today, Johanna brought a candle, a dilly bar and a birthday present for Nea.

So, meet Johanna.  A very, VERY important person in Nea's life.  Of all the therapists, Johanna had the toughest job because she came into Nea's turf.  But she earned Nea's trust and she was able to teach her colors, share toys, match objects, and so on and so on.

Johanna and Nea

 In short, Nea's success is because Johanna was invested in Nea's success.

Johanna came to every meeting.  She actively participated in the first transition meeting with the school.  She came to the IEP and added VALUABLe information about Nea's progress.  Johanna wrote notes on every interaction and shared them with us after every session.  She also communicated with speech and OT frequently and incorporated many of OT's suggestions when trying to deal with Nea's sensory issues.

Of course Johanna always brought the best toys!  She always had this big bag with awesome stuff that Nea loved.  And I'm not going to lie, Nea was known to try and sneak some of them away!  Nea hordes, and Johanna's toys were not off limits to her capers.  I think we have most things back to Johanna, but there may be a few items that have been "pilfered" by Nea the Ninja.

Today was about celebrating a year of growth, new journeys and bittersweet goodbyes.

A dilly bar, and a birthday candle!

And if you get a birthday present that's very cool, you know it's going to come from your developmental therapist who knows what you love, and knows what toy will continue to help you grow.

Nea played with it most of the day and all evening.

Car garage from Johanna!

We will miss Johanna and all her fun stuff, all her patience and love and her infectious smile.

Thank you Johanna for making this year an exciting and growing one!   We will miss you!!   We hope to see you "around the playground" in the future!

The Student

Running today hither and yon to get this kiddo registered for school!

Nea's case coordinator emailed us yesterday to inform us that she had been placed in one of the special needs elementary classrooms in the district.  We were excited for 2 minutes, and then had 4690 questions!

Not having any answers to said questions, made all the anxiety settle in.  I don't think I really slept very well at all.

First, there's not much prep time for Nea.  In fact, there's zero prep time.  Since the school will be on break starting ON her 3rd birthday, she's not able to start until April 9th.  I was having visions of putting her on the big yellow school bus, and it driving off as she looks forlornly in the window as her parents stand crying.  Would she understand she was coming back?  Would she be stressed the entire time she was gone?   Would she flail with despair as she came in contact with a new person after person after person?

Yikes.

Fortunately in cases such as this there is someone who knows much more than I do.  My sister was the first person who was able to talk me down off the ledge....and then my Mom soon followed.  Clearly I needed to understand more things before I moved right into panic mode.

It turns out I CAN change the start date from Tuesday to Wednesday so that I can take her to school for the first time.  She will be in the afternoon class, which works out very well.  This means we can keep her with her current therapies at Pedi Rehab on Wednesday mornings, and then go to school in the afternoon.  A busy day for her for sure, but I think she's ready to add more to a day.  OT has been very pleased with her progress and since that's first in the morning, it will help set the tone for the day.

Also, I can choose which days Nea is bussed to school.  Who knew?!  My sister explained that whole process to me, thank goodness.   So I will take her to school one day a week and the other 4 she will ride the bus.  AND it turns out I can change that whenever I want, or for a day.  So on the first day of school I will take her and she will ride the bus home.  Hopefully this will help with 2 things when she has to ride the bus on Thursday to and from school.  1-the big yellow bus is not a new experience.  2-she gets it that the bus takes her home.

When I registered her today, I was able to meet the teacher and speech therapist!  It was not planned, and so nice of her to pop in to meet the parent of a new student.  (The freaked out parent of a new student- lets be honest.)  Our conversation went like this....

Teacher:  Hi! Nice to meet you!  I'm looking forward to having Nea as a student!

(okay, side note.  She had me at Hello.  Seriously.  The girl is spunky, vibrant, great smile.  All vibes are positive and full of wonderful energy. )
Me: Hi! Nice to meet you as well.
Teacher:  We don't have all of her paperwork yet, but we will by the time she starts.
Me:  Okay, sounds good.  You have to know that I'm a little freaked out with this!  It's a huge transition from EI to the school system.
Teacher:  Oh, I understand.   That's true for many parents.  She'll do just fine.
Me:  She probably will.  However, I will be a mess.
Teacher: (smiling)  We're used to it, it's okay.  It will all be okay.  The students do really well, they like  coming here.  They think I live here and this is my house!
Me:  (I love her.)  *stupid smile*
Teacher:  Do you know how much therapy she's getting?
Me:  Yup!  60min/week of Speech and 30 of OT.
Teacher:  Oh! I'm so glad you know all the details.  We just don't have it yet.
Me:  No problem!
Teacher:  Just let me know if you have any questions, okay?
Me:   "You and I are building a relationship because we share one thing in common.  One precious thing that means more to me than life itself.  I've been responsible for her growth, her spirit, her wonder and excitement.  And now I'm going to hand you the baton.  I'm scared to death to give you the baton, but this is her journey, not mine and hand you the baton I must."  (then I had a RuPaul moment....So don't f*#k it up!)  (Okay, I didn't say ANY of that.)
Me:  I sure will!

The teacher and speech therapist leave and I go back to my paperwork.  Seriously, it was a little surreal sitting in an elementary school doing my homework at a desk!

In walks a little girl who is clearly about to lose it.  She's probably a 2nd grader and she's just about in tears. She's with the principal...

Principal:  Okay, well lets call your Mom and see what she says.
Girl:  (dials phone):  Hello?
Girl:  (starting to cry):  Mom said she was picking me up and she's not here!   She said she would!

Oh my, poor thing.  Then my attention turns to the secretary as I hear her on the phone.

Secretary: Well I have 6 students here that were supposed to be on bus #xyz.  The driver drove off.
Secretary:  No, there was no sub teacher, it was the regular teacher.
Aide who is with the orphaned students:  What are they saying?
Secretary: (covering the phone) ....that the teacher told the driver all the students were on the bus.
Aide:  Well we know that's not true, because 6 of them are standing here.
Secretary: (back to phone) Okay, well they will be on the side waiting.
Me:  Uhm....you guys.  As a person who is going to have a student be on the bus for the very first time, this is freaking me out!   (and YES, I DID say that!)
Aide:  Honestly, this has never happened before.  Seriously.  We've never had something like this.

Of course not.  Of course the day I come to the school for the first time I get to witness a bus snafu!!

Nea's therapists and I are working on creating a social story for her about school.  We will include pictures of the school, the bus, the classroom, and hopefully the teacher will send me a picture  :-)

Me: "Hi, I'm Nea's mom, and I would like your photo"

It almost sounds stalker-like!!

****Update*****

The teacher has already emailed me back and will be taking pictures of her, her aide and the classroom for Nea's social story.

Did I mention that I realllly like her?!?! :-)

The Warrior Swimmer

Swim class today = a little nutty.

Nea's instructor is very patient with her and knows her moods pretty well.  Today we had to be in the big pool, which may have made everything seem very different to Nea.  She played along with the instructors usual things like "big arm circles" and "kick, kick, kick", but after 15 minutes she was ready to spread her wings.  

Or flippers.  Whatever.

My little Aries warrior is fiercely independent.  Soon into swim time Nea started yelling "NO!" every time the instructor tried to do something with her.  No crying, no whining....just a simple "NO!"  The instructor gets big props from me to try and figure out exactly what the issue was.   And when she did, she worked with the issue perfectly. 

Nea's issue is that she wanted to do it by herself.  Because they were in the big pool today, Nea was wearing a little floatie pillow around her waist.  She figured out she couldn't touch bottom soon enough, and she also figured out that she didn't go under either.  She was thrilled.  

She would put her feet up against the wall, push off saying, "3, 2 , 1 blastoff!" and back she would go!

Once she got out there, you could see the look on her face...... "uh, oh" and she reached out for the instructor.  I was happy with the instructor's response, "Hey, you got out there....you come back.  Swim back."

Clearly Nea was in no position to argue and she started kicking and doing "arm circles" to get herself back to the wall.  The amount of energy she had to use......

And then back to the wall for a rest.  

Don't think for one minute that Nea was in any danger.  The instructor was very close to her and could have grabbed her in a nano-second.  I was confident she was safe.  But what I appreciated the most, is that she was pushed out of her comfort zone.  And I also appreciated the little "cause and effect" lesson.   I am a firm believer that the worst thing that you can do for my girl is coddle her and let her off the hook because of a disability.  I'm not saying that she can do every single thing set in front of her because I know there will be stumbles.  But I've said from the very beginning of this journey that the only limitations Nea has are the ones we (parents, friends, family, society) place on her.  In her mind, she can do everything.  I'd like to keep that drive and that passion alive in her.  I think it will take her to places that none of us have dreamed.  

Okay, I lie.  I've dreamed.   I saw a little girl this week who was Nea's age.  The amount of talking and communicating she did floored me.  Nea's delays stood out loud and clear.  I'm not comparing, I'm not saying Nea is less in any way.  But I'm also human and I know that the world can be cruel.  I would like it if she didn't have to have her Autism to deal with on a daily basis.  I would like it if she could be embraced for just being her and not have to have special things like EIP's and therapists and communication adjuncts.  I'm human, and I want for my kid the same thing every other parent does.  

But that is not our road, and that is not our journey.  And really, there are all sorts of blessings we have been receiving that I'm not sure I would have understood otherwise.   (that's probably a different post!)

Wow...where did that come from?  Okay, back to swim class....

Back and forth, back and for the rest of the swim time.  The only time the smile was on her face, was when she was "swimming" by herself with the encouragement of her instructor.  Would I like for her to hang on to a swim bar and float on her back, kicking appropriately?  Do I think that she should practice more powerful swim motions?  Yes to both.  But today was not that day, and the instructor knew that.  And that's why she gets major props from me. 

Doing the "blastoff" and swimming back to the wall seemed to give her a sense of accomplishment.  Oh of course we know that she still has to learn many fundamentals.  But dog-paddling is the first step in that direction.

It's been an up and down week with therapies.  We are blessed with therapists and instructors who have invested time and energy into Nea's success.  I can never say thank you enough!!

But THANK YOU!!!!!!

Can you hear me now?

Have I talked about listening issues before?  Have I talked about auditory sensory processing troubles?  Oh who knows, I can't remember!  Regardless, you get it now.

Jamba Juice treat

First, let me talk a bit about OT.    

Nea is doing well with crawling in spaces, going into tunnels, walking across unbalanced surfaces, etc.  Her therapist has been working on helping her gain upper body strength as well as gaining better proprioception when leaning forward.  Nea prefers to play with things at eye level.  At her age, it is not developmentally appropriate and if we don't "buff up" this sensory piece it will only harm her in the long run.  We have been working on (with the OT's help and suggestions) many "falling forward activities."  At home, this means that her Poppa holds her up and drops her face down to the floor.  Of course he doesn't drop her, but Nea gets that sensation, which eventually re-forms those neuro pathways.  Many times I also sit her on my lap and lean forward with her in my lap to get something off the floor.  She resisted a lot at first, but she grew to actually enjoy it.  

That seems all complicated, but the more developmental type of play she does....the more social interaction she will get.  Her peers are not going to want to play with toys at eye level.  

Yesterday, she put her train track together ON THE FLOOR and played with the trains actually looking DOWN at them.  That's a huge step.  

Okay, so clearly we know Nea has sensory issues.  Pretty much every professional in a tri-county area writes that down in some report somewhere.  And we all know that hearing is a sense.  Of course it's affected.   

Without a doubt it is difficult to get the attention of a  2 year old (almost 3!) many times.  I have to say (because hindsight is significantly 20/20) that we noticed that early on in Nea's development.  I could say her name 1000 times and she would never turn in my direction.  However, if I clapped my hands, or squeaked a toy, or banged on a table, she would immediately turn in my direction.  At first I thought there might be a hearing issue, but she could be upstairs and hear her favorite video come on (even with the volume low) and come barreling down the stairs.  She could hear fine, but some things just weren't getting through.

Turns out there are lots of studies on kids who have ASD (Autism Spectrum Distorder) who also have major auditory processing difficulties.  I could recite the statistical information (because trust me, I did the research) but really I just completed my stats class in my MBA program and I have no desire to play around in those numbers again.  Rest assured, its a significant amount.

Now remember, not every kid on the spectrum is the same.   Some kids have limited processing of auditory information and some kids are hypersensitive to sounds.  There is a neurological issue in the brain in how it processes sensory information.....including hearing and it affects each child in a different way.  

What they also discovered in the research is that speech is the most difficult to process, versus other sounds. Well now it makes sense why she responded to that silly quack sound I would make versus her own name.  And as maddening as that was at the time, I am very grateful to understand it.  If there is a dangerous situation (like....she runs ahead of me when we are walking in the parking lot) I used to say "Nea!  No! Stop! Nea!  Nea!  Nea!"  And of course my girl, who has an issue processing speech did not register any of that.  But because I know what I know....I have a "danger sound" that I make.  It sounds much like a fog horn (its the best description I have) with her name included in a very low tone.  It's the best I have.  But it will make her stop immediately when she hears it.

We continue to use sign language when she is in states of frustration or excitement.  What amount of auditory processing she has, is tossed out the window when those occur.  This becomes important to help her with impulse control in the pool when I sign "wait" or "sit".  She will follow direction well, as long as the message gets to her in a way that works.

Enter school.

Think about how much listening you did/do in school.  Even in a early learning center with a very fun, exciting special needs teacher....you are still going to have to listen.  AND there may be some instances where you have to listen and follow direction.  That can be paramount for an ASD kiddo, and could end up frustrating for everyone.  So today at therapy Diana did some auditory exercises with Nea.  

She laid 4 cards on the table that all had pictures on them of different animals.  Each card had about 8 different pictures.  She put a CD in and it rotated through each animal sound randomly.  When Nea heard the sound she had to put a token on the animal picture.

It was a game she loved! 

"I got a chicken!"  "Oh! I know! I got a cow!"  "It's a kitty-cat!"  ....on and on and on.  She stuck with that activity for a full 20 minutes.  Her accuracy rate was well over 95%.  And if there was a sound she hadn't heard before (like the sound of a donkey), she remembered it when it came around again.  Interestingly enough, when she heard the bees she would quickly cover her ears and close her eyes.  Apparently that sound is received negatively when she hears it and that's good for us to know.  I tested that theory when we were sitting eating lunch and just randomly made the "Buzzzzzz buzzzzz" sound.  She immediately covered her ears, closed her eyes and turned her head.  

Auditory exercises will help her in school.  And that's a keen skill to have at home as well.  But they are exhausting for her and she spent the rest of the day in a pretty low-key mood.

I appreciate Diana thinking ahead to school things....and for giving us more tools to use!!

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.

  

Catching up!

That's literal and figurative!

We seem to be doing a lot of catching up around here.

Catching up with illness.

Yuck, THAT was a mess.  Nea had a nasty ear infection that took us awhile to get diagnosed.  Her behavior deteriorated over the course of a week or so, and I really didn't have anything to "pin" it to.  When I took her to her pediatrician, I simply said, "She's head banging more.  That's it.  That's all I got.  Something's wrong."  And to her credit (which is why I love our pediatrician), she gave her a thorough examination head to too and discovered a flaming ear that a prompt care doctor had missed a couple days before.  Very grateful to have been heard and listened to with such vague symptoms as those.  I know that's not always the case for some parents and they begin weeks and weeks of frustration.

Catching up with therapies.

Because she's been sick (and not treated for awhile), therapies have gone....well, not so well.   Lots of tears, lots of yelling and "NO!" and lots of frustration for everyone involved.  After 5 days of antibiotics her developmental therapist writes this today....

"Nea's focus and language were great today!  She was asking questions, answering questions and making choices.  She had great joint attention between activities. "

This is such an improvement from the previous phrases such as "stressed today, can't seem to focus"  Nea a also drew an actual face on her shamrock today.  This is a first for her, to be certain.  She drew a face with eyes and eyeballs, a nose, mouth and toes.  All of which she named as she drew them.   (Mom note: I can't find the toes.....)

Silly Shamrock (toes included)

I hope that speech and OT go just as well this week because she needs a few good sessions!

Catching up with peers.

We had a play date on Saturday.  Nea did very well, watched the other children closely, talked to them and even talked with me about them.  On Sunday we went to the playplace to burn off some energy.  She maneuvered around the play area like a pro. and did the "Mom check-in" often.  She would come over to where I was sitting and say, "Good job Mommy!  You're here!  You did it!"  She's pulling phrases together and trying them all on in situations to see how they work.  It makes me just grin at her as she tries to navigate the crazy social scene.

Learning about CandyLand

When we were shopping she was her usual chatterbox while sitting in the cart.  She uses a lot of her jargon language to talk about all the items on the shelves.  As I tried to squeeze past a couple standing in the aisle, she piped up and said, "Um...excuse me" They smiled big at her and said, "ohh of course, Lil' Miss"  (always so happy when adults converse with her)

"NO!"

The "arm-crossed No!" is the newest thing on the scene.  It's not too sass-filled yet (and quite frankly it's kinda cute) it's just a very emphatic "I really mean it when I use hand gestures" sort of thing.

Her IEP is this week!  Already!?  How is that possible?  Wasn't I just looking up what that meant last week?

And here we go....a jump into the unknown....

 

Change is in the air....

The seasons are starting to change.  The snow keeps falling but I think Winter knows that Spring is right around the corner which is why it kicked into panic mode the last week or so.

Change is coming for my girl, in a big way.  I don't know if she's picking up on it or not.  We've had a few rough days around here with sleep.  Or it's the pull of the full moon. Or (as a friend just reminded me) the retrograde of Mercury is the culprit.   Or it's some bad, spicy tacos.  Whatever it is, there's no denying it!

We had our official exit meeting with Early Intervention this past week.  This is where I sit down with all her therapists and our case worker and review progress.  Just like we had an "opening" meeting, we have this "closing" one as well.

It's nice to sit around with everyone all at once and get a full picture.  Everyone has a different piece and a unique perspective.  I soak it up like a sponge.

The OT said that Nea has made amazing progress and has met most of her goals.  She wanted to make sure she could adjust to "activities of daily living" for a 2-3 year old, and Nea has done that.  She goes to the playground with others, attends birthday parties, eats at restaurants, etc.  Sensory integration is still a work in progress and sensory needs being met will be key to learning for her.

Diana from speech therapy reassessed her and felt she has made "excellent progress" since we started in April.  She likes the marked improvement in her play schemes as well as verbalizations during play.  She can choose objects from a field of 3-5 without problem.  She is still not identifying objects by function or displaying an understanding of location phrases.  Her expressive vocabulary is +100 words that she uses to request, comment or protest.  She's not relating personal experience (meaning she won't tell you that we went swimming the day before) but she refers to herself by name.  She is age appropriate when in comes to articulation, but she still has a 30% or more delay in speech overall.

Developmental therapy shared that they are up to 45-50  minutes of attention but she has to present items rapidly.  Transitions are getting better but it's still very difficult to participate in non-preferred activities (Mom insert: "stubborn as bull").  They still use sensory breaks for her with spinning in a chair, the bean bag or weighted blanket.  She still prefers to play alone and doesn't always respond to verbal requests but she is emerging with the skill to seek out others for shared interests.

Overall, they are good reports.  Everyone was very clear that if she doesn't get into school in April she will still need services during the summer.  A gap would be bad for her.   Their professional observations are what we see at home too in our day to day activities.  Early Intervention has been very good to us and provided great resources for Nea to make wonderful progress.  Our case worker was great, always in contact and always willing to listen.  And of course, you all know how I feel about Nea's therapists.

I came home that day feeling a little verklempt about getting close to saying goodbye, but feeling armed with good information to move on to our next phase.

And this is what greeted me in the maill:

"STUDENT" ???!!!!???  Wow.  Student.

And if that wasn't overwhelming the list of people attending the meeting include:

School Case Manager
School Social Worker
Early Start Teacher
School Psychologist
Special Ed Teacher
Speech Therapist
Nurse
Occupational Therapist

No wonder parents feel overwhelmed when attending the first IEP meeting!

We are bringing:

Early Intervention Case Manager
Early Intervention Speech Therapist (Diana)
Early Intervention Occupational Therapist
Early Intervention Developmental Therapist
Me
Poppa

14 people!!!!!!   14 People creating the best education path for 1 little girl.

Nea is not coming with us that day.  Can you imagine how overwhelmed SHE would feel?  She is thrown off when the Developmental Therapist comes to a meeting at the place where the Speech and OT are!



Nope, Nea will have Grandma all to herself!  There's still a little time before she's a "student."