Kindergarten and a crazy week!

It has been an interesting week.

Overwhelming by far!

Monday-marked 12

years ago when Andrew and I

“officially” started dating.

Tuesday- Our Biggun' went to

his first day (half day with half the class)

of Kindergarten!!

Wednesday-His first full day!

So, yes, 12 years ago..

would I do not think

we ever could have guessed

how these years have gone.

Even if you asked me back then

what I could think

would be the most crazy thing that

could happen.

I know early on,

I thought Andrew could be the one.

I dare not speak it

to him.

Just to myself

and

I think after a few

months I mentioned it to my Mom.

And here we are now.

Since this year has been crazy

I did not register DHR

for preschool when I should have.

That means we came down to just this month

trying to do it.

Needless to say the place where

Aidan went was full!

So instead of being mad,

I can only decide this means

it was not meant to be.

We love it there

but

possibly there is some place

else that will do better for our DHR

and

with great hope that in

January, our Bitty may attend

also.

We have looked at lots of different

schools, even last year

thinking we may try this

new preschool

designed for Children with

special needs.

I researched it for months

and

we went on a tour

still not sure.

This week I spoke to another school

closer to where Aidan is going.

We took a tour

and

it seems to be what we were

hoping for.

So, filling our papers for that etc.

Filling out papers that are sent home

the first week for Aidan. (It's a ton!)

Then on Tuesday get a call from

Bitty's new teacher!

On his IEP we decided with the

information from his Teacher

he should move out of the

rigid, structured Autism only class

into

the mixed Developmentally Delayed class.

Yesterday, I got a call from Aidan's school Nurse

just to remind me of what I need to give her.

I called Bitty's Teacher to confirm his Open House

(which is tonight!!) is walk-in one.

I called the director for D's school

to get a few more things answered that I forgot to ask.

I met with a few other Kindergarten

Mom's to talk.

Figured it is one way to meet them.

While out ran into someone I have known

since middle school

then

did a double take and saw

the WRAL Mom Blogger who

did a post on the AWESOME

Boot Camp Mom's class I go to.

She did a double take also,

since we exercised side by side for an

hour.

I sent her a message later

and

she was like, I KNEW you looked familiar!

I am going through piles and piles of papers.

I have gotten emails from all teachers

on top of the phone calls.

I am marking our calendars so we

hope not to miss anything.

Add the typical house chores to it all too.

We also have Aidan's Open House tonight also!

The Boys are waking on their own now

super early in the morning.

So we are doing super early bed times.

They seem OK for now with the change

in schedule, it is Andrew and I suffering.

:)

Yet again n Parenthood learning

just another new level of exhaustion.

I am doing my darnedness to

keep things straight

this week has by far been the

most processing I feel my brain

has done since March.

I have to rearrange Bitty's therapy

appointments also

and

don't get confused on carpool times!

It may seem silly,

but it sure is

knocking us for a loop!

Oh and of course,

add another showing

on the house while trying

to get just school

stuff organized!

First Day of Kindergarten!

Is he ready?!

Daddy and our Biggun'

DHR popping in with the photo

Bitty enjoying some Chickfila
before we got to see the preschool

DD enjoying Chickfila

                        

A couple different poses while sporting his PE Uniform today!

Parent Advocate?!

Just the other week

Logey had his

every few months check in

with his Developmental Pediatrician.

We got a good one.

We are supremely thankful for that.

As recommended when Logan was receiving

services from our local Infant Toddler Program.

The advice is to take his

IEP (Individualize Education Plan),

notes from his therapists,

information from

other doctors

and

anything else that

may be helpful.

Thankfully, this Pediatrician

has never wanted to

put Bitty on any medications.

He did recommend a

supplement

but no actual medication.

Logan has never given this

professional his attention

until this appointment.

He waited until the end

of the session to approach him

and

lift his shirt

for the Doctor to listen to his heart.

Then he “played” a little with

the Doctor.

He made the Doctor's day.

The appointments

are of him looking over all the

information we bring in

and

talking to me listening to

our concerns

and

telling him what is

going on with Bitty from our view.

I mentioned he has regressed some

but

with great reason behind it.

That there are some big changes

that have happened

and

I know that is why he has regressed.

I had to explain what our changes were

and

so I get to see big bug eyes

and

jaws drop.

The nurse also did that too.

I just smile and keep on.

Our Bitty impresses this man.

We'll take that!

Our Bitty impresses us too.

I know we are biased but

it sure makes us feel good

when others see it too.

He also commented on how

good Aidan is with Bitty.

I said, they have connected on a few

levels and

Aidan tries to understand

what Bitty does.

That said, I mentioned how some

people have questioned if Aidan is on

the Spectrum also.

The Pediatrician laughed and said,

“No, he is not!!

He made eye contact when I

walked in, he kept it while talking”

and went on listing how that is not true.

I smiled and said, “I know.”

Just nice to hear especially

with the critics out there

saying that everyone

wants a “label”
or

people are over diagnosing

Autism.

Due to all the critic voices

when we knew Logan

needed more evaluations.

We went three ways.

People always claim

to get a second opinion.

All 3 of our opinions

confirmed the exact same.

Anyways, after our talk.

He said Bitty doesn't have

to come back

unless he regresses

for unknown reasons.

This Pediatrician

doesn't have to monitor

medications

for him

and

he also says he knows

Logan sees a big list of Doctors

so we can knock one off the list!

I can make an appointment

just to use him as a sounding board.

I use all the therapists as

sounding boards too.

I like to hear multiple professionals

and

the teachers all on the same page.

That is nothing I ever anticipated

and

have been extremely thankful

for this experience.

He also smiled, when I said the

Teachers said Andrew and I should be

Parent Advocates.

He said, “You just made me laugh. I was thinking

the exact same thing! “

I said to him what we said to the Teachers,

“We don't know what we are doing!

How can we help someone else??”

The Pediatrician said,

“It also helps Parents just to know

they are not alone.”

So, here is step one.

I have a ton of things to talk about but

will do it over time

and

only over whelm

any readers little by little.

:)

Understanding, hop into a pair of our shoes

Here is the Carrie novel describing as many aspects

of the public tantrums. 

It was 20 or more minutes, the amount of time it took for us 

to get what we needed at the store 

and 

leave. 

Which at bad points is the only way to 

really stop the fit. 

It does take him 

a while to calm

so at times

he may be over it

but the calming takes some time

these are things you learn after watching

closely after over 2 years of these tantrums.

The other weekend we went to BJ's.

Logan HATES BJ's.

I typically go during the week

when it is less crowded

and

get the giant shopping cart

with the plastic car

attached to it.

He loves the car cart.

I see a germ fest.

But, he will “chase” the straps,

(he likes the visual of items with a tether point)

try to watch the car wheels roll,

(they are stickers)

and

spin the steering wheel.

This will distract him from the harsh

lights, give him something

to focus on instead of hearing

the loud music

and

keep him distracted from his

stress he feels in public settings.

Well, we went on a Sunday.

I now know since it is more crowded

they only increase the music volume

to get it over the crowd noise.

That said, they only have like 2 or 3 of the giant car carts.

So none for Logan.

Since he is doing well verbally,

he began flipping out.

Screaming, “Heeelllp! I NEED HEEEEELLLLLP!!”

His volume only increases

and

went to the point his voice was cracking.

He went back in forth on being

rigid

and

then flailing then limp

(a typical fit for him)

all while being strapped in a regular cart.

People look

and

we take deep breaths

and

keep moving.

Hoping he will work it out.

People keep looking, some avoided coming

down an aisle we were in.

One older man in particular started to widely circle us

while staring

and

then

cutting the circle in half

and

circling again.

At this point I got a few kinds of communication

with Logan that

he wanted out of the seat.

He continued to tantrum

and

I knelt on the floor of BJ's

to begin

joint compressions

and

hand hugs.

These are some things

I can do to calm him in

a fit.

I looked the circling man in the eye

and

waved a nice rigid, “HIIII!”

wave.

He then turned

and

walked away

and

no longer circled us.

Logan calmed for a moment

and

insisted on holding my finger

and

then flailed

and

pulled

and

screamed the wonderful words again.

..you know what I mean..

“HELP! I NEED HEEELLLLP!!”

All while dislocating said finger of mine

that he had a death grip on.

I take a deep breath

removed his death grip from

my poor finger.

Of course, since my 2nd surgery he is concerned

with our Family of 5

“splitting”

especially if I get too far from him.

So, at times to not physically

be touching me

panics him.

But still, I hoped

perhaps he may calm when

I got my finger back.

No such luck.

And he continued to

insist holding onto me.

So, I gave him my entire hand

which he kept

trying to get only one finger.

We continued on throughout all of this.

I finally picked him up.

He screamed the same

rigid, flailing, limp and repeat.

A woman I passed, smiled and looked at us

and said, “I remember those days.”

I at over 10 minutes of the intense public fit

I wanted to say, “Actually, no. He's 4 and Autistic.”

But I did not.

There is no point to do that.

She was luckily (for us) just being nice

and

trying to show understood what it was like.

I got to a point where some of the lights

were off

and

just by getting to a less bright place

I got him to calm some.

Only issue is to get out of the store

is to get back in the bright lights.

So it maintains, but he calmed a tad.

Promising home was not helpful.

He was still mad we did not get a certain shopping cart.

At check out, I had to resort to our typical public

“swing” for Bitty.

Meaning, I lean over

and

suspend him away from my body

and

sway him like he is in,

almost a hammock-like swing.

This at the right time will calm him

if you try it too soon he just gets rigid

and

screams more.

But not here,

so

he calms

and

goes to “Logan Land”

(as named 2 years ago, by our oldest Nephew and Niece,

he spent time there instead of with us.

Kids could see it

but not like some adults, they in a way “understood.”)

He was dead weight in my arms,

staring at the lights

in the ceiling

but happy.

At this point our skinny Bit's body

actually let me know he has put on weight!

Because I was feeling the burn!

This is good!

He is 4 and 18 months shorts are just starting to be a little

snug on him.

A little..

and

at times I can get a 24 month pant

to not completely fall off.

He's so little, socks I bought him 2 years ago,

he is still wearing!

I finally had to throw them out!

He wore holes in them!

Right before check out I knew the store had some

sea salt caramels I would like to try.

I don't usually buy candy

but after the show like that...

yeah..I picked up the candy..

I cope with stress mostly by exercise

but after being pregnant with

our DHR I at times tend to

take it out on some junk food after

a bad bout of public tantrums.

My sweet Andrew put away all the groceries while

I strapped the kids in.

He put the chocolates on my seat in the

van so I could whip them open immediately.

And of course share with him!

As he looked at me at one point and said,

“This is the worst public tantrum I have ever seen.

But it is not the worst he has done for you, is it?”

I said, “No, I have had much worse.”

Life is never dull.

We are given challenges.

We are not graceful but try.

We do the best we can.

We are not perfect and never claim to be.

You must keep on truckin'.

There is a glimpse of what one

moment (a long one) us as

Parents of a child on the Spectrum

is like.

There are plenty of good too!

Those are typically seen as us bragging!

Like I have tried to tell some people

who offer negative criticism

about strangers,

things aren't always what they seem.

You do not know their situation.

Try to understand

before you let your mind

jump to what may or may not be.

[A]lways [U]nique [T]otally [I]ntelligent [S]ometimes [M]ysterious

Two weeks from today our oldest

will begin Kindergarten.

EEK!

Less than 3 weeks and our Bitty will begin

another year of preschool.

I haven't even gotten around

to getting our DD enrolled

in preschool.

I need to do that,

if he is to go where we choose they

will have space for him.

Our Bitty goes to his Developmental Pediatrician

this week.

We just check in with him a couple times

a year to address in possible concerns

and to monitor his

progress

from all aspects.

You know, he see's an Occupational Therapist,

Speech Pathologist , Geneticist

and when school starts

he seen another OT and SLP.

We also had our amazing speech pathologist

recommend another specialist, an RDI

Therapist.

She thinks he would benefit greatly from

one.

We haven't even begun to look into it all.

I did a bit of research on what that professional's

goals/purpose of sessions are.

It sounds like a good option.

But with Bitty the change must be slow

and

expect regression

and

mass amounts of frustration.

Like hours, seriously, hours a day of it.

Our Bitty has made leaps and bounds.

This month marks 2 years since his

first diagnosis of Autism.

I had known for a while something

wasn't right.

That black cloud feeling following me everywhere

I went.

He also slipped away so slowly (regression)

we did not “notice”

or

perhaps it was denial.

Who knows.

It doesn't matter.

What matters was actually

acting on what needed to be done to

help him thrive

and

be a happier child.

And

that has been

and

will continue to be done.

As is for all Children,

he just needs some extra

help to do so.

Yes, I want to post all about him.

As we are impressed and happy with all our

Boys do.

I just like to mention Bitty.

Reasons, it's been two years of

extreme hard work, over 2 years of

“torture” (fits lasting 4-6 hours a day on bad days),

odd stares, extra “tips” from strangers,

and

there is so much more but my brain will not

bring the thoughts to where I can type them.

Oh yes, of COURSE because

coming in October is the Fundraiser for the Autism Society

of NC.

We missed it the first year, but did it last year

and

will continue to do it every year as long as we live.

This image they posted also reminded me to

write a post about our Bitty.

We do it because it means a lot to us.

It is something we “understand.”

We do it for our Bitty

who even more than our

“typical”(whatever that means) Children

he gives us other ways to

look at the world.

From the Autism Society of NC

Bookstore we bought some books

for the siblings.

Explaining sometimes

what the siblings go through

due to their brother/sister

being on the spectrum.

Both books

also state how

the “typical”
sibling will copy the Spectrum

child as a way of trying to understand

them.

Sometimes that makes a connection between the siblings.
Re-reading the books was nice for me
as I was frustrated at times
that they are copying Bitty's habits.
It was very nice to have the reminder of what that means.
It gave me more patience with the added chaos.

Our Precious Bitty who we would

beg and plead to interact with us

we would almost “chase” him

trying.

Meaning anytime when we would try

he would walk away

and

so we would follow him and try again.

This would be from us Parent's,

Grandparents, Cousins..

you name it,we all did it.

Even going out of our way to have a toy he liked.

Now, he will show us toys.

Or tell us something.

He will stay “close” to us.

He was 4 in April.

He is developmentally 2

with some “perks”

like letters and numbers.

I will find random words he has spelled all over

our home.

He will organize numbers appropriately

from single digits to numbers in the thousands.

He is still in diapers.

Yes, over 4 years of changing diapers for him.

He finally has gained some fine motor skills.

He has just over the summer

began to have a good chance of turning door knob

and actually

opening a door!
(this is good and bad at times..)

He also has gained the strength to unlock and lock the deadbolt

and also the

door knob lock!

Our Bitty is still capable at memorizing books

of all kinds, movie scripts

and

from Baby Einstein videos

learned more sign language from the DVD

than all of the therapists

combined have tried.

If you look into research it will tell you they learn better

from robots than people.

You also hear about people “losing' the

diagnosis.
The research showsthey
 “lose” it because

after the years of therapy

and

hard work

they can mask their difficulties and cope

well enough.

So, no true “losing” of it,
 they are still

who they have always been

just learned to
 “fit into society” better.

Summer for Bitty has been rough, minimal “structure”

as in no way to “know” what the day has in store

We began bringing him back to Church.

He has done well enough.

He will do some fits but I can quickly calm him with

joint compressions.

He also once he gets done he goes limp

and

will find some lights to stare at.

We have had multiple people after Mass

comment on our Children.

THANKFULLY, all nicely.

But these people go out of the way to tell us it.

One day one women assumed Logan was 2

 (as most people think Daniel and him are twins)

I smiled and said, “No, he's 4, he just has some 

special needs which is why he is throwing the fit.”

She says,

 “Well, he doesn't look like he has special needs.”

Wow! I was taken back.

This I have heard a bit.

He doesn't have a “Look” about him

well, if you watch him you will see some..

lets say “quirks”

but, yes

he has special needs

and

doesn't have an

“obvious look".

I can only assume that

she thinks his face should

look “different”

but alas,

you never know who has what.

Just because someone doesn't “look” one way

and

just because you may think

they “look” a certain way,

doesn't mean you are right. 

There will be some hopefully

helpful posts

or 

give some understanding

of 

what it is like to

have Autism in your daily life. 

This will all be leading up to 

the Autism 5K in October. 

It is just around the corner

with how fast time seems to go!

My goal is to get a few more Autism based posts in.
Let's hope I can meet it!