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 First day of School

Of course you know I spent the last 24 hours thinking of all the things that could go wrong today.  I worried about transitions, about the paci, about the backpack falling off, about her being tired, about her not eating a good lunch, about the bus ride being too stressful, about being late, about the weather....you name it and I fretted about it.

I tried to pretend that today was just another day.  In fact, we know it wasn't.  Today was the day I was sending my tiny (they always seem tiny when they are getting ready to do big things) 3 year old off to school with strangers.  I'm sure they are wonderful folks (I'm learning just how much so!) but they are strangers to me and to Nea.  It's the first time that she would be left alone with someone other than her parents, family or close friends.  Would they pick up on her cues?  Would they be able to handle a meltdown? Would they comfort her through tears of stress?  (ya, okay...back to the worry thing.)

We did therapy this am as usual.  Wednesdays are going to be very busy days for her as she will be doing therapy in the morning and school in the afternoon.   There's not a good reason to take her from Diana and "A" at this point and she is really bonded with them.   We are not sure how long therapy at Pedi Rehab will go on as yet, but I believe we'll know when the time comes.

We went to lunch after therapy with Poppa.  A great, yummy lunch full of protein and a few carbs.  ("good lunch" stress unfounded).   She started to get tired after a full tummy, but we managed to keep her awake on the way to the school.  And of course we arrived on time ("being late" stress unfounded).  I tucked her paci's in the backpack in case of emergency which was no biggie for her ("paci" stress unfounded).  I put her backpack on her, and she held our hands walking into school.  (The backpack was fine by the way....another unfounded stress.)    Oh, and the rain stopped  ("weather" stress unfounded).

Her teacher and 3-4 of her classmates were waiting for us at the door.  Big smiles from everyone and a friendly "Hi Nea!"  That made her stop pretty quickly because she doesn't do those initial "hellos" very well.  But she bounced back fairly well  and gave a smile with a very shy, "hi".  The teacher gave her a teddy bear saying, "Would you like to carry the teddy bear to class?"  Nea's response, "Yah, okay!"

We walked in line with the other students, Nea holding tight to the teddy bear and walking right along with everyone.  The little boy in front of her turned to her and said, "This is how we go to school."  I told him that we didn't know, and he was doing a really good job showing us how!  The teacher sang "Follow the teacher to school..." with all her little ducklings singing along with her as they happily followed.

When we got to the classroom door, the teacher stopped and opened the door as she told them to put their backpacks in the spot.  Nea followed right with them.  She never looked back at me, she never hesitated one second.  The teacher smiled at me and said..."let's just go with it."  And with that, we turned and left.

As you can imagine, I cried all the way to the car.  I really think they were tears of joy.  I think my angry tears and my stress tears were shed days ago.  But today was about months and months of planning, of organizing, of meeting after meeting.  It was formulating transitions and developing an IEP that works for everyone.  That moment right there was everything we had been working towards so she could start her academic career successfully.

And we did it.

The bus ride home was the next worry, as that 50 minute ride was probably going to be exhausting and boring as all heck.

School ended at 3:00 p.m.  I received an email from the teacher at 3:15 full of heartwarming info.....

".....I am absolutely astonished by how well Nea did at school today...."
".....Nea participated and was very focused and engaged in the story we read...."
".....she did well with transitions too.  I have a visual schedule and just showed her pictures of what was next and she needed little redirection."
"....she was very excited to ride the bus home...."

The bus arrived at our house at 3:28.  Oh a 28 minute bus ride home is so much better than the 50 minute one we were anticipating!  We were thrilled!

Nea almost danced off that bus. Her opening words when she stepped out....

"I RODE THE BUS!!!"

She was excited, she was animated, and she was full of energy.  She had lots to say I could tell, but she just couldn't find all the words.  She walked around the house gathering up her trains and a few favorite toys and put them in her favorite spots, lined up just how she likes them.  Finally, she got a sentence out....

"Mamma!  I was at school!"

I am so over the moon happy for her.

Autism Awareness

It's Autism Awareness Month and I've spent the last couple of days trying to figure out what that means for me and my family.

Nea was diagnosed the month of August of last year, so this is our first experience of living the "awareness month."  I've been rather frustrated with Autism Speaks the past few weeks, and really am trying to sort out how I feel about that organization.  I think there needs to be more for the actual autism community then what is currently happening.  I have an issue with their verbiage of "cure" and "epidemic" because I don't want those sort of messages sent to my daughter.  Autism Speaks really spearheads the charge with the "awareness" activities and so I really had to decide if I was hooking in or hooking out.

What do I want awareness to mean?

I don't think I want folks to feel bad for us.  We are living Autism every day.  Some days we understand it, and some days it throws us for a loop.  But every day we fill with love.  I don't think we are special in that regard, so sometimes I get very shy about this whole month devoted to Autism.

I don't think I want people to feel sorry for my kid either.  At her age, she doesn't understand if you look at her differently.  But I'm pretty sure, she will understand a sideways glance later down the road.  If she sits curled up in a chair with a pacifier and asks for squishes, I don't want the "oh, that poor thing.  Bless her heart" look.  I really despise that look.  She's trying very hard trying to fit into our world because right now our world has decided that is the way.  And some days she struggles with that "fit in" thing as she's learning about all the rules.  She doesn't see things the same way I do.  But she's looking at faces more now, and making eye contact more easily.....she's going to start seeing when you look down at her with pity.

Please don't do that.

What do I want awareness to mean?

I want a shift.  I want our world to start to shift and move and try to understand hers a little more.  I want there to be days where we see that kid sitting curled up in the corner trying to gather strength and we surround her.  We understand that her Autism may give her some anxiety and she's experiencing it 100x more intense than most.   And so she is surrounded with a protective shield of a couple people who stop and sit with her until it passes.

I want us to empower and embrace children and adults with Autism not because we think they are "special" but because we believe they are important.  They are equal.  They are human.  It seems so minimal, but trust me.....we're not there yet.

At Nea's therapies today, the manager of the rehab department asked me to speak at an upcoming event.  Just a short 3-5 minute discussion of what Nea's therapies have done for her and for our family.

Of course I said yes.  And it made me think.

First, I can never speak for just 3-5 minutes about something I feel very strongly about.  But in the interest of keeping the event moving, I will stick with the program.  :-)  And in reality, access to therapy is what has given Nea her life back.  It's given her the ability to communicate, to get sensory issues under control, to tap into her world and pull her out.  It's made me VERY aware of her Autism and how it affects her, and how I can help her.  We are lucky.  Not everyone has access.  I would like the awareness folks to help change that.  It's insane that some insurance companies still do not cover therapies like ABA for children who so desperately need it.

Nea in Speech Therapy doing a listening exercise.

Secondly, today I received a very beautiful gift from a very beautiful friend.  It is a charm necklace that contains Nea's name, all our birthstones, a star (she is one of course!), and the symbol for Autism awareness which is a colorful puzzle piece.  

There it was, right there.  Everything I think about Autism awareness was wrapped up in one beautiful  piece of jewelry.  Our family.  

Autism Awareness is our family.  And our family is aware of Autism every day.  We work to help our kid acclimate to this world, and we are ambassadors to those who want to spend the time learning about hers. 

The necklace also has "Blessed" written in the silver.

Yes, we are.