Nothing more to say.........

two hours to myself.....

Yep, I got two whole hours to myself this friday morning.

No kids,

no chores,

oh but one thing: I was at the dentist!

Funny how something like that can seem so wonderful-

heck I almost fell asleep in the chair!

And I love when they ask " how are things? Have fun plans for the weekend?

I feel bad for lying- so I don't

so I"m never quite sure how to answer these vague questions of life.

It's polite chat, it's short talk... you know we all do it

but I've realized it's harder and harder for me- I just have no answer.

And then if you do just say something little, or vague back, it always comes back to

oh, what grade are your kids in?

Which okay, again polite chat- I have Sarah, Megan and I again never know how to answer for Ty.

Heck, people will occasionally ask him (neighbors, anyone walking a dog in the neighborhood) what grade he's in and he looks stunned, not sure how to answer to.

I guess as a society we define kids by their grade and even if you give an age, they always come back and say, oh is he in 3rd grade?

Again, circled back to school.

And don't get me wrong- polite chat is nice, quick hellos how are ya's, it's how our society works- we see people at the store, hi how are you?

You see people at school drop offs, at the park, anywhere around town.

But I guess this is where my world has almost squashed my social skills- trained my social energy, and always gives me pause to decide how to proceed with the conversation.

What grade is Ty in..... well, he did a partial year of Kindergarten when he was 5, but did finish out the year (with lots and lots of extended breaks and no school on Wednesday - so a 4 day school week.

Then he started the second year of kindergarten at age 6 and it lasted 2 1/2 months before it was necessary to pull him out and I began homeschooling through our school district (independent study).

That was still pretty much not successful- the home part was fine-

it was the once a week going to meet with the teacher for just one hour that was the struggle and part that caused major problems.

Yep, just one hour a week...... and again it's a second year of kindergarten

but the going there, well pretty much hell.

Then forced by hand to "once again show everyone this system isn't working for him- and we were advised legally to "let him fail to show them "...

which was the hardest thing in the entire world.... literally putting him through something he physically and emotionally can't handle and we have no choice

besides, what do we know- we are only HIS PARENTS!

It seems so simple, but let me tell you the process and hell parents go through to help their kids and are consistently pushed to the side and then people who have never even met your child are giving advise and deciding what's best

Yep, that's the broken special education system

and it sucks!

Our son was actually in a really good place- he had been out of formal education for 9 months,

it was summer time,

we were able to maintain a pretty descent "bubble" although taking little one to preschool

when it was time for him to have to start school........ he was now entering the first grade

It was exactly this time 2 years ago in fact.....

and nothing literally killed us emotionally more then having to put him back into school for an entire full day school day, 5 days a week- to show "them" this is not the proper placement for him

I still cringe just thinking about it- he had been doing so well- for him,

behaviors had again improved,

he was more stable,

he wasn't living in fight or flight-

he was more engaging

very much like where things have been for us for the last 2 weeks

and it was literally as quick as 1 week, then 2 weeks:

it all unfolded, and it unfolded badly

he was threatening us like he had never done before, his aggression was so severe and of such serious nature

all I can say is it was already a parents worst nightmare, and let me remind you, he's 7 and in first grade

and it didn't matter what we said, because remember in the beginning, he tries so hard to hold it together- to just physically exist in that school space- that he's just a physical body

was he learning- no

was he engaging- no

were the problems that were completely dismissed- yep!

anyway- it got bad very quick and we had to let it "keep happening"

He wasn't eating (he lost 4 lbs in just 2 1/2 mo), he wasn't sleeping (and I mean literally), he wasn't playing, he wasn't a little boy

He didn't smile- his spirit was completely lost

So fast forward finally one of the last "episodes" that occurred- and by this time we had our behaviorists on board documenting all things!

it was first week of March- he had lasted 3 months this time

but the last episode was so bad, we either had to take him out or

he'll have to be hospitalized

that's how bad things were

bad doesn't even describe the hell he was going through and the hell our family was going through

Fast forward we are now two years from that point of "throwing" him back into the school environment (and yes he had every support the school district offers- just cause they have services, if they are not the right services, what good does it do?

So, two years ago, we descended into a hell that we never knew even existed

and it's taken a lot

a lot of love, patience, tears, the right professional people helping support him and our family

and again, "closing his world down to bare essentials"

And I can tell you after that experience, we see his spirit, we see him smile, he's stable medically, he's grown, he's learning, he's engaging, he's so smart, he's funny, he's sleeping (well usually, just inconvenient times during the day :), he's full of life and spirited emotions

He's our son- and the good part is "we have him back"

The boy we know is in there, but just struggles so much

but he lives in our house, we take care of him, we love him, we are a family unit, and as tough as some of our days and weeks are and can be

He is our son and part of our family.

So, I don't really care what grade he's in, I don't care how people judge our circumstances, I don't care if others don't understand

So, not that I am grumpy to have social chit chat, polite chat-

it's just hard because it's so hard to even just say "he is homeschool-ed" because that alone gets people asking more questions, that lead to more uncomfortable chit chat that continues and then the "wow you and your husband are so amazing,"

and then the added "I don't think I could do that"

Trust me, you become the parent your child needs you to be

so no, we aren't amazing

we are parents-

and just trying the best we can!

See this is what happens when I do get two hours to myself.

I start thinking, and realizing this is an entire world outside of "our world" and I'm not sure how to fit in myself these days....

It's easier to stay home and watch my son do something new, try a new recipe, read a loud some sports statistics that gets him excited, play with his sister,

because these are all amazing things that we went so long without seeing....

I almost feel like it's like when you have a newborn -

where you can just watch them and you are amazed at all the cute little things they do and noises they make..

when I think back to 2 years ago and what became of that time- we almost completely lost our son-

That was hard.....

So, my bubble world is zipped back up and he is right now happily playing indoor basketball.... laughing!

True confessions.........

So, a bit of an off week.

We are all feeling a little under the weather with this darn chest cold. But it is what it is.

Yesterday was a bit of a "test" day for Ty.

As things have been going so well "for us"- but within this tight controlled environment

Until yesterday. Brian stayed home from work, change 1.

I took Sarah to school- change 2

Megan stayed home from school not feeling well- change 3

It's Wednesday, which means Sarah comes home from school earlier for early out day- change 4

I took full advantage of my hubby being home and went and ran errands and had lunch with my friend- change 5

I think you're getting the picture....

And with all this, ultimately Ty needed physical restraint due to aggressive behaviors. :(

First time in weeks ( I think, at least to this level)....

and just like a little toddler, he had the behavior, and after we physically had to take control of him- he fell asleep!

Yep, asleep..... he didn't fight the restraint (as he usually does)... and as he lay there on the carpet of our TV room, his eyes slowly begin to close...

But, I"m physically restraining him... AND HE'S FALLING ASLEEP!

He didn't fight it, he was obviously so tired- it's just like the toddler who acts out because they're exhausted and then CRASH! fast asleep

So he slept- which was good!

So here is my true confessions....... ugh-

basically he didn't handle the day very well- he hadn't hit me like that in several weeks- and really the behaviors were just all over the place-

he was trying really hard to "control" his world, trying really hard to "organize"

but struggled greatly!

Were these things so significant to cause regression...... well in the world the rest of us live in-ABSOLUTELY NOT!

but to him........ it's everything!

The teeny tiniest of things cause these over reactions- which for him typically mean aggressive behaviors

And in reality- it was really nothing- except 5 different changes for him-

So where does this leave us... well this morning he wanted me to 'LOOK UP A LEGO SET'

NOOOOOOOO!!!!

This is not a good sign.. and when I simply ignore the request- he ultimately threw a cup of water at me...

it ended there, which is great

but the fact that his mind is going somewhere which we consider dangerous territory,

an area that begins to take it's hold and manifest behaviors

an area that without a doubt 100% of the time results in out of control behaviors, the sole reason for aggressive behaviors-

and it's simply because he's trying to gain CONTROL of his world.... and for some unknown reason this is where his head goes :BUYING SOMETHING...... I"ve mentioned before

we absolutely have to run the other direction when we hear him say "buy me something from Target".....................ugh-

That by far is the worst words we can hear him say to us because it simply means-

watch out

I'm totally out of control and can't stop myself-

So true confession time:

this is his reaction to very small little changes (as we see them)

he has been in a good place, and I really thought he would have handled all these things better

but between now and the first part of 2014...... I have 2 words

setting events

These are things that are likely to cause an uproar to Ty and his ability to cope and not have problematic behaviors, aggression, etc

We'll start with tomorrow: Sarah has teacher work day- so no school.

Monday, holiday for all

Then it's teacher conference week so early release every day

our behaviorists have to change the schedule because they are taking part in a special training to help protect themselves and be certified to deal with physical behaviors - it's a training specific for my son's case

then it's the Thanksgiving Break for the entire week

Megan's birthday

December: Christmas time: Christmas decorations: Christmas lights and decorations: (can you say sensory system overload:

and I try to tone it down: but the tree alone-

WOW- if you have an over reactive system

Some school events that have been packed in right before xmas break

Brian has several late night work meetings

Xmas break for the girls and Brian

Our awesome behaviorist is taking those last 2 weeks of December off- so she won't be here

And here's our ticker: I've mentioned before my husband is donating a kidney to his older sister.

And it's almost time

We're looking possibly sometime in December before xmas- or just after the new years

And it truly is the most amazing thing - incredible he was a perfect match

and true confessions: how are we going to manage?

Ty couldn't even handle these small changes of yesterday

how the hell is he going to handle Brian gone, in the hospital for at least a few days-

I'll have to figure out some how to get Sarah to school- solo parent with these major changes

Oh, and yes I would love to try and spend some time with my husband and support him while he's in the hospital donating a kidney.... that little thing- you know, the person I love and want to support and be there by his side

how the hell am I going to be able to do that.... I have Ty, I don't leave the house, unless Brian is here with him- we have no one to take care of him- no one who is able to take care of him (we had to stop having babysitters come - it's wasn't a good situation any longer)

And even when Brian is out of the hospital and home recovering

we are looking at probably 6 weeks recovery off from work

me taking care of him as he's recovering

me responsible by myself for Ty and the girls

meals, the house, the dogs, errands, the store, dishes, laundry

yes, most of this seems like no big deal- I"m a mom, I of course wear many many many hats

but the problem is- I have a child who becomes so aggressive and dysregulated and developmentally requires a lot, including medical bowel irrigation every night

how will this all happen?

How on earth will I be able to even manage some of this- when even on the best of our days

he requires a lot!

Heck, he needs Brian so much, and Brian won't be available

and not just for one day, for weeks and weeks

How will this happen- when we have so many setting events coming up

these are things that are completely out of our control

Our controlled bubble environment that helps our son so much- helps him in ways that are absolutely incredible to see

and the bubble is about to have lots of holes

and his controlled environment will leak and leak without much pause

And if yesterday was any indication: of his lack of ability to cope with the slightest of changes in routine:

is it okay if I say "we are screwed!

IT honestly frightens me to think of- because my husband and I have been such an awesome team: but there is no way either one of us could do this with out the other

we each have our roles

and our roles play a critical part in all of our children's lives

despite all the things we go through with our son

we have 2 daughters- who also need us, want us, and deserve to have our attention and focus too

so true confessions: I have no idea how on earth we are going to get through these next few months

I'm scared

I'm worried

I'm strong and I know we will ultimately end up on the other end of all this

but at what price

It will be so incredibly hard and challenging to be a good supportive wife while my husband is going through this very major thing and recovery

It will be so incredibly hard and challenging to be the mom I need to be for my children

It will be so incredibly hard and challenging to be the person I know I am

And just when we think we've been "challenged" in life..... we have this new curve ball as they say

Well, I guess God really thinks highly of us- right!

Or, maybe he forgot that we called Uncle a long long time ago....... because seriously

I certainly hope he's sending us down some Angels to help us and perform some miracles during this time.... do you hear that God?? Come one now, extra strength, extra miracles, extra anything - Alright.... !

For my family, please!

He slept.......

Although my little guy has not been feeling well with a bad cold, asthma flare up......

although I've caught the cold now and feel worn out....

are your ready for this......

HE SLEPT ALL NIGHT!!!!

The nights since Friday have been tough, he's waking up every 3 hours coughing like crazy, waking up and having a hard time going back to sleep

It's been a pretty rough few nights- and just when we think our sleep situation can't get worse

and we are feeling TIRED!

He once again surprises us with sleeping through the night!

I don't even remember the last time he slept through the night without waking,

without needing something to eat,

without watching a video,

without having such a hard time going back to sleep

And you don't even realize how much we wake up every night until.....

you don't wake up! WOW!

Now, I'm happy because:

it meant he wasn't up all night coughing which is good

but I think the only reason he slept was

because he is sick with a cold

which means it's pretty much not gonna happen again.

This is the weird thing we've always experienced with him

When he's sick, something happens to him

he's always calmer,

he tends to sleep,

he tends to be more engaging,

he tends to be, well more of himself that we know is there,

just so much gets in his way

so it's kind of this weird thing and not that we are ever happy he gets sick- trust me, he's not the easiest patient

but it does give us a bit of rest from our more typical days where he is just needing so much from us all day

we are working on independence, but even on the best of days, he's a very needy kid,

and struggles a lot with basic skills,

and even just existing without our presence

It's always a work in progress,

that's why he falls asleep usually at my feet when he naps, or needs our attention to accomplish things

it's probably a lot due to trying to self regulate, but needing us to co-regulate

but when we have days as we've been having (even before he wasn't feeling well)

well, we don't mind.... it's baby steps, it's tiny steps forward, tiny steps back,

and when we see him smiling and more full of life

it's all worth it!

and then he sleeps....well, that's just icing on the gluten free dairy free cake! :)

Sick sleep picture of the day :(

Poor guy is fighting a bad chest cold and having problems with his asthma....

he's up a lot at night- but at least he's getting some sleep during the day.... and I guess it's sad,

but not feeling quite well certainly calms one's body down-

yes that's sad- but we always know

not feeling good= calm Ty

A little rest time for all of us!

My football historian.....

It's Sunday.

That means, football Sunday.

That means Brian and Ty will be watching football, playing football, hanging out with football on the TV.

This is a good thing.

This makes Ty happy.

This makes Brian happy.

Ty has become quite a little football historian. He right now is watching about the 1982 Super Bowl game of 49ers vs Bengals.

I think it's super bowl 16?

He's so excited to talk the old plays, the history making plays, to talk about the old greats in NFL.

He loves being to talk to daddy about all of this.

This is a good passion. It's not just football- it's learning about things from the past.

It's connecting Ty and Brian to things that not just Ty enjoys- but Brian too.

And Ty knows that! That's what makes this even more awesome.

After all, connecting to people isn't his strong point- this is where Autism usually interferes.

He likes to connect to animals.

But he is trying, and I love that they can connect over football.

This is great!

Ty and I connect over baking and building things.

These connections are wonderful. These connections are critical.

These connections kick Autism in the butt......

and I'm proud of Ty for working so hard to make these connections.

And I"m proud of us as his parents for fueling these connections- we are an awesome team and I knew that before we got married......

Let's get this Sunday of Football started!

I have never said this before.......

What a fantastic Halloween we had.

Never before have I ever said these words, ever!

He did it. He had fun. He definitely struggled, but he did it!

My little cheerleader and K-9 unit Police officer came back after trick or treating and even traded candy- without problems!

Then it continued into yesterday evening- Ty had been waiting to trade with Megan. (She was off with friends on Halloween)

I had a moment yesterday afternoon, where all three of them sat in the living room, trading candy, no complaining, no crying, no hitting,

nothing- just sitting around trading candy.

It was truly a moment that is put into my memory vault. All 3 of them sitting together (first of all this is huge in itself)

then trying to negotiate the world of candy trading- wow!!!

I'm just so proud of all three of them.

The girls are being patient with Ty, especially Megan and he's trying so hard.

He's able to try hard, he's able to deal with certain situations right now. Even disappointment with the candy trading-

I mean really the minute big sister gets in there, she likes to drive a hard bargain.

But Ty too took total advantage of Sarah- that's kind of how it goes with big brothers and sisters-

I remember!

Now we are into November- Halloween is past us- and I will smile every time I think of this years Halloween.

And if anyone ever wondered how we can possibly "live this way" closed up in our bubble....

Well, now you know. And days like this make it easy!

It brings our family together! It helps us be a family!

From only 1 1/2 years ago at the age of 7 his anger, aggression, chaotic behavior was so much that we had the realization that we might not be able to bring him home after one of the last episodes of rage. There is nothing that can make you feel worse as a parent.

But we were talking safety for everyone!

His behavior at the time was a symptom- when he has behaviors it's a symptom.

A symptom of a body that cannot get control of itself, a mind that cannot get organized- absolute dysregulation and it's like it's just spinning and spinning- out of control.

But he is still just a little boy...... he's our little boy.

And this is what his external world needs to be like so that he can be a little boy.

This makes me feel good as a parent- and honestly some days I feel like Super Mom because I know most people could not do what we do.

It's hard for sure, beyond what most people can imagine:

but at the same time- it's absolutely incredible to see the little boy that is thriving, growing, developing, and best of all

HAPPY!