Bring on 2014.

Really, the year is over and we start a new year tomorrow? Well, then let's do this...and we will tackle each challenge one at a time....and even though mistakes will be made..we will keep our heads high and know special moments will happen! So happy new year and may everyone have good health, happy moments, and good luck in 2014!

We are strong!

Ten days.... not that I'm counting or anything. But seems like everyone I know keeps asking "how can we help during this time?"

Simply put, I have no idea. I just have no idea how little guy will handle all that will go on

everything he knows and thrives for with his routine

will change in ten days- when daddy goes in for surgery!

From sleeping, to playtime the way daddy plays (I play football and other sports, but do I play exactly like daddy- of course not- I'm not daddy- I'm mommy!

And it's only referring to two different people who play because they are two different people

That's a tough change for him. He tends to like to do some things with me, and other things with Brian- just for this reason.

But I do wonder, how will this affect him? How will this affect our entire family? And the reality is - it's incredible that Brian has this opportunity to help his sister.

A decision like this is without complete hesitation, without thinking about it, it's just an absolute YES-

He has the opportunity to help his sister like no one else in this world... to help her feel better, to get back to being a wife, mother, daughter, sister, friend

How amazing is that!

And how to help, I'm not even sure others will be able to help in the way they think.... groceries, yep that's helpful, errands, definitely, meals... of course- but we also understand how difficult some think it is to cook GF and DF... but still helpful

and as far as our household goes, we are going to do the best to minimize other changes, transitions, we are going to do our best to get through the healing days, to remember to breathe when things get rough, and to know bad moments happen, but so do good moments

When I let me fear take over as to what if........

I'm reminding myself, the stuff that I fear, will pass... and we will experience a good moment again.

I do not want to send out negative signals to the kids- we will all need to rely on each other and I know my family is strong. Boy are we strong!

Falling off the track....

Merry Christmas.... day one after Christmas day....how was yesterday?

Our day, little guy was up at 2:50 AM.... then finally Brian and I were up at 6:30

some how our 7:30AM don't bother mom and dad threat had no impact - haha , but wow tired!

Then gifts, gifts, and more gifts... we come from a very large extended family- and I do know my children like the act of unwrapping... no matter what... so I literally wrap everything- one book, one hair bow, one set of mittens...

and when we have all day since we were not going to go anywhere.. well, it's fun for them!

But was the day without issues.... not by a long shot!

And it's always unexpected and just when we think things are calm.

He had a lot of emotions surrounding Megan and Sarah... but could not handle engaging or playing with both of them at the same time.

Even though they were including him when he asked to play... things just constantly turned sour immediately- tears would begin to flow, and then destruction!

At one point, he started to cry because his feelings were sad, and then boom- anger kicked out the sad feelings and he took his hand and swiped everything off the center kitchen island... ugh.... yep crash!

These are the tough moments of Autism-

The holidays are just overwhelming- no matter what we do to try and minimize the over stimulation to his senses, minimize the flow of people- (actually to almost nothing this year- it's just is too hard), and yet still it's just a hard day!

Should we be surprised?

no, we shouldn't! I just like to be wrong in these situations

We left the house, as a family, on Christmas eve to deliver the toy drive donations to the children's hospital!

That was hard for him.

Everything is different this week- that is hard for him.

And he knows that daddy will soon be going into the hospital to donate a kidney ..... and honestly- I am not sure he understands , even though he says he does.

Today he heard Brian talking on the phone about it, and Ty went off running and locked himself in his room.

And even though we are open to remind him that it's for daddy, not for him, I don't know if he can even get his head around that because he always says, I heard you say I have to get my button changed.

And maybe that's what he heard, even though it wasn't from our mouths... it's just what is always always on his mind- every little whisper he thinks we do- it's about him and his button needing changing

Anything he doesn't understand, it must be he has to have his button changed.

It really is a terrifying experience for him, regardless of the routine of it- over 4 1/2 years of every single night of doing his bowel irrigation on the potty..... it's still difficult and not routine to him.... he struggles with it still every night!

So, day one after the big holiday- day one of recovery to bring normalcy back to our house, day one of again creating an environment in which Ty can better cope and deal with things in life, to appropriately react to situations that frustrate him and disappoint him, to be happy, to be calm, to be content, to be loving!

These are all really difficult when his system is just overwhelmed.

And we have exactly 11 days to get things back in order for him before Brian's surgery.... so here's to working hard to help our family achieve "normalcy" for us and to get things back on track- before things fall off the track once again! Because we just can't control the universe, as our little guy needs!

We just do the best we can.

We left our house as a family of 5.....

First time we have left our house as a family of 5 since August...

to deliver 191 Christmas gifts we collected from our generous friends, family, neighbors and our community to deliver to the Children's Hospital.

Ty didn't want to go, but still willingly got in the car. However, he did not get out of the car once we arrived after a short 15 minutes drive. We could see how hard that was for him- he was more anxious than he's been recently, he was more sensory overloaded- (the rule in the car became a no talking zone).

But he did it. We did it.

I know it was hard for him......But it was successful!

The holidays are not easy on my little guy.... as exciting as it all is, it also comes at a big price to his system!

His internal self....

I was very proud of my family! We all know that we are helping others have a brighter Christmas. And we understand that we are so fortunate to not have a loved one at this time in the hospital.

It's Christmas Eve.

My children are anxiously watching the NORAD Santa Tracker just waiting.

It's fun to see their spirits so bright, and pure joy.

It's like the Kenny Roger's Christmas song, "Christmas is for kids"....

never heard it? It's a good one... I grew up listening to his album, my mom would play it while we all decorated the tree

It's a fond memory of mine... and the song rings truth about the meaning of Christmas!

It's for kids, it's to cherish our loved one's, near and far, it's celebrating the birth of Christ, it's about giving to others!

I want my children understand the importance of giving to others, helping out others, being kind to others, and know that they can make a difference in this world.

Look at what one little family was able to achieve... by reaching out to others... we created a lot of smiles today to so many kids! That feels good! Happy Birthday Jesus! Merry Christmas to you all...... And I don't know the next time we'll be able to leave our house again as a family of 5, but that's okay!

We did it today, and now it's time to get back to what helps Ty the most..... absolute calm, structured, predictable, therapeutic lifestyle!

That's what he needs..... that's what he'll get!

My week of woes and blessings

Oldest still home from school with ear infection... day 4 1/2.... but doing better after antibiotics... even with ear tubes, it's been really bad.

We started more construction on our new bedroom, bathroom, laundry room.

Why ...... well we love to just throw more matters into our already complicated life. Honestly as tough of a week it's been... having different things to focus on, between Christmas, construction, Brian's surgery coming up...

it's always good to have more than one thing to think about... too much focus on one item isn't good in this household, esp for little Ty!

But one thing I hate is lack of sleep.. it's so hard to function and stay rational when you're tired!

So this was my day yesterday, okay actually starting Wednesday... one vomiting due to ear infection, plumbing turned off for a few hours..... no power all day Thursday... things didn't go as "planned"..... I did forget to mention to them ,/p>

they are working on our house..... I should have warned them NOTHING GOES AS PLANNED

took sick one to doctor...

proud of Ty who handled really well all this stuff happening around him... including going on the potty as usual when there was no power.... he had a light (thank goodness for our generator when we camp).

but more typically is anything different- it's a no go in his mind

I was very proud of all of them for handling the best they can the inconvenience!

I have an awesome friend. she is such a blessing- who brought me a Starbucks and an iPad to borrow (ok, 2 ipads to borrow)... and I can't say anything more about them in case my kids are reading this...... ;) - she really knows my kids so well!

And to say it was a life saver.... well- yes it was!

The house is turned upside down (more than our usual messy house).... and having a sick one and not being able to do laundry-

yeah, I"m a little behind!

Contractor is disconnecting washer and dryer tonight- so they can pour cement slap for the new floor... which means what???

Mama is doing probably 8 loads of laundry today....

And I guess if it doesn't all get done, it doesn't all get done...

Oh and when they were working on the electrical panel..... something happened (big surprise) and it blew out my one and only cooking device.... my toaster oven..

My real oven had stopped working last June.... haven't replaced it yet (built in wall one's are not cheap)

and the one cooking device I have been using... to bake with Ty, to toast his EVERYDAY GF bagel that is part of his routing

to bake,

did I mention, to bake?

The one thing Ty and I do inside the house together.... BAKE!

But the poor electrician feels so bad, and he's a nice guy and is replacing my toaster oven!

That's awesome... so I just have to head out and buy a new toaster oven!

sounds good to me!

So, overwhelming week, I'm tired, I'm cranky (ask my husband), I'm running at 90mph, and I'm kind of ready to slow things down!

Oh, forgot, it's Christmas next week, oh and 2 weeks from Monday, my husband is donating a kidney and will be in the hospital for several days then off work for 6-8 weeks!

Slowing down, probably not in the forecast..... Lord give me strength!

surviving on 2 1/2 hours sleep.....

And today's new day brings the sun up with out this mama sleeping more than 2 1/2 hours.

Yep, a bit tired- have oldest home with ear infection.... or at least severe ear pain- she has ear tubes- second set... lots of good drainage- but not until the last 30 minutes had we been able to get the pain under control.

And where there's pain, there is a tummy ache, tears, nausea, dizziness, more tears, more tears and lots of trips to get the wash cloth wet with warm water to be a relieving warm compress on the ear.

Yep, fun night!

And why is it, I"m awake, helping Megan all night- Ty for the first time in weeks decides to sleep until 6:00am

Really... of course- but in reality- that's a blessing!

But my poor Meggie boo was so miserable, that she didn't want mama to leave her side- so I knew she was hurting!

So finishing up my first cup of coffee for the day.... most likely there will be a refill necessary around noon.

predictability?

A new day, a new reality.... because in reality- every day is a new day and we never know what to expect from our little guy.

That is one of the big differences we experience... with our girls, pretty much on a day to day, we know their personalities, we know their de-meaner,

we know how they'll "typically" respond to any given situation..... but with Ty- it's not like that.

I can honestly say I never know from minute to minute what to expect from Ty.

He is a kid who needs so much routine, structure, absolute consistency with all things, no surprises, no changes and he needs to know what to expect.

Kind of ironic don't you think?

Because he is actually the opposite of all of that in each day to day moment. I think this may be one of the hardest parts of raising a child with the issues he has- whether it's attributable to Autism, the Mood Disorder, ADHD, his PTSD... who knows.... maybe all of it.... but no 2 minutes ever looks the same....

How he responded in a situation one time, well don't count on that same response the next time

So it is always like a guessing game, throwing darts.... because at this point, we've been through this for 91/2 years with him, and for me, my nature is to be prepared, to be ready for whatever comes my way.... I really hate being caught off guard, especially with behaviors-

It's like when things are not going well, he's expressing lots of behaviors- well we're already on guard, so it honestly seems easier to "deal with".

Compared to when things are going well, he's actually showing "more predictability" in his mannerisms, showing flexibility

as things have been for the past 2 weeks..... then is seems so much harder to re group and deal emotionally with these meltdowns.

It is a quick jump out of our emotional good place, back to survival, keep everyone safe, keep him safe, and even trying to predict what his next move will be so that he doesn't hurt himself or others.

He is always full of surprises when he gets into this mode... and there is no way of getting him out of it without taking full control of him

He gets into this place that is honestly so out of touch of reality, he's up he's down, he's sometimes hallucinating, he's manic, he's just out of control.

No other way to put it.... and nothing will stop him

It just sucks!

I think this life of constant unpredictability, the constant emotional roller coaster ride, the possibility that any minute he may explode, and what will it look like?

Will it be manageable, will it be verbal, physical, will he destroy things, will he threaten the girls, will he run away?

These are always the unknowns that we always have sitting at the top of our memory, (until weeks go by and it starts to sink lower into our memory banks... only to then be shot back up to the top like a cannon creating chaos and pain

because, at least for me, I quickly go back into a mode that I hate being in.

It's not a natural state of mind for me, it takes all my energy

but that is certainly one thing my little guy has taught me along this journey

there are more sides to me than I realized, I do have reserves I never knew I had, and I've learned so much about myself

it's quite amazing when I think about this world of our life, and the lessons we've been taught. I guess as they say, you NEVER stop learning! :)

A swift kick in the reality end.......

Had a swift kick in reality tonight... 1 1/2 hour meltdown.....

and just when you get used to NOT having to deal with such big behaviors- ... ugh! The reality pill is hard to swallow tonight.... It's certainly exhausting.. and I really hope tomorrow is not just a new day- but a day of better moments! Including sleeping past 3:30AM

not me, my little guy!

Can I have a pity party? Please....

And this is why I always say, mommy can't get sick, because there is no one to take care of me! And I still have to do all the usual for the rest!

Well, mommy has caught the cold... my head, between my ears, and just blahhh....

and to make matters worse today... after a horrible not being able to sleep night

The coffee cups my husband gets me from costco... my nice big 20oz cups... my thing... it's what I do every morning... and no one is going to take it away from me

My own specialty coffee drink made by me for me

in these big cups I like

I opened the new bag of cups... and then realized these are not the right one's.

These are smaller, oh no... on this morning I didn't sleep very good, I don't feel very good- and I don't have my usual and it means I don't have lids to fit.. just so many things going wrong this morning!

I am saying this with a grin on my face, and silliness in my voice..... if you can't tell... I've been trying really hard to get pity and sympathy from my hubby....

I asked him to stop at the local pharmacy to get me cold medicine- can't believe we don't have any on hand....

he said after work,,, I said I can't wait!!

and I gave a sad face... hoping to gain some sympathy and some cold medicine!

We'll see.... he first takes little one to school... and I"m hoping he is able to stop for me! Because my head is going to explode!

Okay, I'm done... thanks for listening..... the world will go on, the day will continue as usual, and mama will do what she must....

isn't that what we do best.... march on despite feeling crappy?

Happy Friday!

Nothing else to say.........

Nothing else to say......... my heart continues to smile!

My little violinist.......

I got out! woo hoo..... My oldest, my violinist, had her very first Jr. High Orchestra Winter Concert!

And let me tell you, this was no ordinary Jr. High Concert!

My Jr. High Orchestra certainly didn't sound half as good as this group of kids!

They were amazing- it was the most beautiful, joyful Concert! So enjoyable to listen to

This group is truly talented... and I"m so proud that my little Meggie was a part of it! So proud of her and how hard she has worked this year- it's hard to believe it's only been 3 months since the start of school.... and WOW....!

It was so wonderful to be out, participating with my Jr. Higher- seeing her smile, her cousins, Aunts and Uncles came to listen... and although she told me she didn't want me to invite anyone..... I know secretly she was so glad they were there.... she is proud to be apart of this amazing Orchestra!

And gosh she looked so grown up in her Concert Attire.... really my little girl is just growing up so fast.... and one of the best parts...

She and I "hanging" out eating sweet treats after the concert just the two of us to celebrate! That was precious!

I'm just so proud of her... things aren't easy in our household, and it's even harder to understand it when you are an emotional, hormonal, twelve year old... when all things are not fair.. but in our case...

Yeah, I know... she doesn't get to ever have both her parents at an event... it's one or the other.... we don't get to do fun exciting things as a family.... sure lots of one on one time which is how we divide and conquer as we say...

but (as I"m always reminded) she never gets to have friends over, never a sleep over...... these are events that are simply just too difficult with our circumstances...... but what she doesn't always realize is it may not be black and white with these types of things.. but we're creative, she's really not that deprived of fun times.... it's just different than what she thinks is "normal".... despite our efforts to explain to her - there is no "normal"... normal is what we make up in our minds.... because all families have their own "normal" and it never ever looks the same from one family to another... and in reality- everyone has struggles... that's just life.. some more than others, some much much worse....

I'll tell you, the one thing I hope my children grow up to realize is compassion is essential to happiness, and happiness comes only from within oneself.... it's not external- no one thing or one person can create or take away one's happiness!

And happiness stems from finding joy in little things, in love, feeling loved, in our special moments, not in expectations... expectations can only ruin one's true happiness..... It's taken me decades to realize that.. and living a world that was completely different then what "we expected" when we began our family... but that's just it.. we had an expectation... we grew up a certain way... that's what we knew...... But it really is a gift to know and feel happy- true happiness!

And I"m not saying our life is easy- one bit... but if I sat and sulked about it all the time, what example am I showing my kids... not a very good one!

I"ve had to transform my way of thinking about things... and I think I have have happy kids because of it! (at least I hope so...)

And kids who are compassionate, loving, and can see the "bigger" picture of life... it does start young!! I'm proud of them... and I"m proud of our family..... like I said, it's not easy- not even close... but "our team" is taking the lead in this crazy race.... but we're in no hurry, and we definitely stop to smell the roses, the lavender, and look at the butterflies along our journey!

ps As I was typing this... my little boy wrote a Christmas Story... how adorable.. it's about a little boy named Ty and he couldn't sleep on Christmas- and he got out of bed and saw Santa Claus... but Santa Claus used his magic Christmas dust and sprinkled it over Ty to help him go back to sleep... ! Wow... love his creativity and imagination... and best of all...

He was writing it - all by himself.... this is my kid! Love him.....

Another point for the good moments!

And then in the next minute

TV was lost due to an "issue" and somebody decided to join me and Sarah while I read a book to her

yep, he sat patiently, engaged, listening, even asking questions.

And when I decided it was the last chapter, and the time came to end the reading session,

some little guy couldn't wait to hear what was going to happen next in the Rainbow Fairies story and asked for one more chapter!

Yes, one more chapter.... wow!!!! That was just awesome!

Another point goes to the "good moments"!

Was that too much to ask........

No behaviorist today due to illness on their side..... Brian has a late night meeting tonight, past bedtime,

Day actually has been really great.... Ty and I have been very interactive together, baking cookies for the neighbors (although he doesn't agree to that)

we played checkers, he let me do a good deep back rub, he helped me wrap a few Christmas gifts..... he really wanted to wrap some himself for Sarah- so sure...

that's very giving of him- and I have to say, he was so proud of himself when he wrapped a gift, put tape on, and a ribbon too!

Talk about gleaming, anyway back to the day, the good times we were having and even ywhen things came up (as we call it sometimes)

he appropriately said he was sorry, took his minutes in the hammock and recovered nicely!

Yeah- score for the good moments!

We decided on pizza tonight since daddy is gone, (yes even a Gluten Free house can have pizza these days... yeah- even delivered: awesome delicious GF pizza and we just leave the cheese off!- we feel so typical!)

Anyway, going well, pizza is delivered, (now this is where mommy obviously got carried away)

I had the brilliant idea to eat dinner in front of the TV in the family room... yeah- so fun, right!!!

Everyone was on board, they all thought this was great, we agreed on the movie- Santa Buddies......

I served everyone up.... got them settled in the family room

then BOOM

this that and other things were happening, people fighting, arguing, yelling... then I realized

how could I have possibly expected them to have been successful at this change.

This was one more change on top of the other changes that occurred today.... what was I thinking!

You see, in our world, change is not good, in fact, multiple changes in the same time period, well, can usually mean catastrophic consequences..... and this last one I added!

Eating in a different room is change one, eating in front of a TV, change 2, daddy not home, change 3, did I mention, not eating at our dining table as we ALWAYS do!

And it was one change too many.... it was a frustrating moment for me.... because in reality (not my reality, but in reality that I think how others live- Was this really too much to ask for?

Heck, it was an opportunity to eat dinner, pizza no less, in front of the TV watching a movie.....

What kid wouldn't want to do that, right?

Well, at my house, we have a different reality, it's called KEEPING THINGS THE SAME!!!

I guess I got caught up in an idea that I thought would be fun..... I really should know better.... something that could be fun, but not if it's DIFFERENT

So to answer my own question,

Yes, it was too much to ask for...... and I'm sorry I had tried to do something out of our usual!

Maybe it would have been successful on a more typical day, nothing out of the ordinary, nothing out of the routine that we are used to (I say we, but really it's a couple munchkins that have this issue... mainly, one 12 year old munchkin, and one 9 1/2 year old munchkin).....

So, note to self, never add another change on a day full of changes!!!!!

Happy mommy here...

And the day continues with puppets and stuffed animal friends that come to life!

Yeah, pretty awesome huh! And even when he did call me stupid, less than a minute later-

he apologized and sat in the hammock for 2 minutes without complaint! Happy mommy here!

My goal, four days.......

While he slept for his morning nap

mom got motivated (somehow) to do a short workout for the first time in about 10 months.....

Long overdue, but I have to say, I had that time to myself!

Which by the way if you can't yet tell by our story...... never happens!

I used to get workouts in.. but there is nothing more frustrating than trying to do a workout, and being constantly interrupted for any number of reason!

That certainly takes the steam out of wanting to work out... it was already a chore, but when you can't even focus on it for more than 2 minutes in a row.... well this mama said forget it!

But with this cold weather, my yard work and outside projects are sort of on hold.. which usually I"m outside while he's asleep- getting to do my work... which has to count as a work out, right?

So I think the winter season has hit, the cold air is everywhere, and it's not so nice to be outside for very long right now.

So, I have told myself I have to figure out somehow to do something physical!

It's not easy.... I prefer being outside... that makes the whole experience so much better... and time go by so much faster!

But I did do it today.....

It may only be one day, but I will try to turn one day into 2 days, and then 2 days into 3 days... and maybe I'll make the goal of 4 days a week to start.

Yes, four days a week- that sounds like a good and realistic goal.

So he slept, I worked out, he woke up, I was done.

Now we'll get on with the rest of our day.... Happy Monday!

This kind of morning

Yep..... that kind of morning

And this is despite somebodies earlier 2:30AM wake up call........

Does it get better than this?

Nope! Not in my bubble world!

Good moments are taking over!

Well, I feel like I've only been reporting on "good" awesome, monumental moments...

which by the way for the first time in well over a year, is finally outweighting the bad moments.... that's a huge turn of events in this household.

For the good moments to out number the bad moments...well, it allows us to breathe, even if just for a few moments at a time.

It means we are "living", enjoying moments, being a family. Does it really matter if we still can't leave the house as a family? I don't think so, this is what Ty can do, so we will meet him where he's at and enjoy it!

It's pretty remarkable, it's something that unless you experience what a crazy, chaotic, full of negative moments and struggles and conflict most of your waking moments ( and really even the sleeping one's too!), well, let's just say, it sucks!

So for us to be able to say and feel we have more smiles and laughter happening than anger and behaviors- well it's simply a wonderful thing.

So with that, I would like to report on another wonderful moment..... The girls and I walked to the market, just simply looking around, just to get out.

okay, I did get a delicious apple cider, but still just simply browsing.

It's so nice to be able to do that, just doing something without it being a DEAL.... well, feels un heard of in our family... so it was just nice.

When we got back, Ty was actually pretty happy to see us (not his usual transition when we come back from somewhere, but much preferred!)

and then he was up to something.

I was instructed to not look, and don't go over by him.

Okay, no problem. My little boy was busy over at the table beading me a necklace. Yep, sitting quietly, patiently, focused on beading me, a necklace.

In fact, he went to the length of putting it inside a box he could find. And then said, "open it".

You should have seen the smile and glee beaming from him. Wow... enough to light up the room! He was so proud of himself and was so happy to give me something he felt was so special!

And he was right... it was so special.... Now how amazing is that, huh??

Man I love moments like that! That is just awesome!

Fascinating sleep story........

Sleep is a funny thing...... my husband just told me something that I find so fascinating!

So when Ty is fast asleep, and Brian has to "clear his throat" you know, that big loud umm hummm noise that so many men make..

well anyway, it happens in our house A LOT.... lots of throat clearers in this household

so Brian was telling me that when he does that in the middle of the night, Ty actually closes his ears with his hands aka puts on his hand helmetand grimmaces his face when he's asleep

Now how does this happen?

I swear the Autism neurological brain is so fascinating and odd at times!

How does he know a noise is being made?

How is he conscious enough to think to cover his ears?

Now I understand when he's awake.. that I get... that we see all the time, that is survival to him.... how the heck does he do it in his sleep?

I guess sleep is a funny thing to the autism brain....

I guess I"ve always known that.... between no sleep, odd sleep, crashing sleep, sleep that can occur at any minute and any where, even on a 2 foot wide bench curled into a ball... .and he doesn't fall off!

How?????

But one thing I've learned is there is no way I can rationalize or completely comprehend, understand, fully make sense of the Autism brain...

I get some things, but others

no way! But acceptance doesn't mean anything except, accepting! That I understand! With my whole heart and spirit!

ten minutes of laughter.....

Wow, what a moment we had at dinner tonight... Ty "found" a joke book that someone in the family was going to be getting for xmas, and that person will remain nameless and the fact that a box was found and raided is totally beside the point....

OMG it was the funniest .. Ty telling knock knock jokes from this book, reading them... Yes reading....... laughing, trying to make us laugh... then Sarah and Megan get in on it.. we are all laughing...

Yes, I said we were ALL laughing... all together...

It was awesome... Gosh the moment was just a moment filled with pure joy and laughter!

Doesn't get better than this.....

Wii rocks!

Wii rock band rocks!

Our behaviorists, L, brought it over for Ty.... it's always a good thing having something "new" and "novel" for him .... as long as you present it in a way that makes it seem like it's no big deal,

and the item will leave with the person who brought it so that it doesn't become "a thing"..... but the more we can have him focus on an activity, an activity that doesn't create too much stir internally, an activity that brings focus and body control movement....

WINNER!

It was so fun watching him play "eye of the tiger".... and he's so impressed that mom knows the words to some of the songs, that one, some GoGo's songs (I think I'm dating myself now.. but love the music!)

I tried it, wasn't very good, in fact I got boo'd off the stage I missed so many notes... Ty thought that was the funnies thing!

Wii Rock Band gets a major thumbs up from this mama!

Sensory heaven

My little guy never ceases to amaze me...... all I have to say is:

2 baths in one day!

For a kid we can hardly get to take a bath every 2 weeks.. .(trust me the fight is much worse than the stink....

but today... 2 !

Now that's just awesome.... awesome for him!

Awesome because a nice warm bath, submerging yourself into the blanket of warm water... well, sensory heaven to some!

And that's a good thing!

My 25 days of Christmas

I like getting fun ideas from Pinterest..... lots of good ideas for the different seasons of the year.

This particular one stuck out in my head and I'm loving it!

It is a countdown of the 25 days till Christmas......... by doing a RAK!

If you don't know what RAK is..... it's Random Act of Kindness! And I love doing things like this...

It started on December first when my husband was off to Starbucks, and I told him to pay for the car behind him...... I've racked 2 neighbors leaves for them, I wrote a note to an old friend who is battling a battle of her own, just to let her know I was thinking of her, and don't get me wrong- kids are involved too!

Megan is bringing her friend a favorite drink to school today, just because..... Sarah drew a picture for a friend, Ty made GF rice crispies treats yesterday and he ultimately did share them with his sisters.

I say ultimately because it wasn't so easy .... but he took time, thought about it on his own terms, like most things, and decided to share. I was proud of him!

I also love to bake things for friends and neighbors throughout this month.... and rather then feeling overwhelmed by doing a huge baking marathon, I thought I will bake a little bit every day- Ty and I enjoy it anyways.... and it spreads it out... so today, someone is going to be getting Pumpkin Spice Cookies!

I guess throughout our crazy world we live in, and by that I mean our particular crazy family situation, the challenges, struggles, the good times and bad..... I have always loved doing things for others.

And I feel dedicated to sharing this with my kids..... the one big thing we have done now for 3 years... is a Children's Hospital Toy drive... we collect new unwrapped gifts for kids of all ages from our community- family, friends and on Christmas Eve we take the toys to the hospital to be delivered to all the kids that can't be home for the Holidays!

My joy is seeing my kids get excited when someone drops off a gift at our house, and they know it's for the toy drive, and they are excited that some boy, or girl, will be receiving it. They say things like "oh my gosh this is so cool, a little girl will love this!"

Statements like that just melt my heart... and when it comes down to it..... I know we are raising good, kind, and generous kids.... some days it maybe be harder, but this type of giving always makes our family smile!

And last year, we collected over 100 new gifts that we delivered to the hospital. It was incredible.... there was so much and my kids loved how many kids we were going to help smile!

We are a family who is touched and affected by medical issues, know what it's like to be in the hospital for an extended time with a child, who regularly need to visit 2-3 x a year..... the peds surgery staff know us by name we are that regular..... so we know what it's like to be there on the other side of our child receiving something special to help take his mind off of where he is at that moment....... and this is our way of giving back to all the other children.... especially during the holidays! We've been there before during the holiday season and were lucky to be home for Christmas.... but there are so many children who have to spend the holidays at the hospital.... so many... and there families by there side.... the gifts we collect are simply to help bring a smile to their faces when they open it and for them even just for a moment to forget that they are in the hospital, maybe have IV's hooked up, maybe experiencing pain... whatever they are there for, maybe for a minute they forgot about it when they received a new gift. That's our wish for all those children!

And my kids get to experience the wonderful feeling of helping others.

That makes us smile!

So, my 25 days of Christmas countdown of Random Acts of Kindness continues.... and if you are reading this, maybe you too want to do a RAK for someone else! It's not hard, in fact, it's quite easy - help someone load their groceries into their car, take the cart away when you see someone done loading their groceries, buy a coffee for the person behind you, send a note to an old friend, help a neighbor with a chore, better yet, have your kids help a neighbor.

There is no one thing to do, there is nothing too big or too little.... when it comes from the heart...... well, that's just amazing!

And don't forget to pass it on.... doing nice things is contagious!!!!!!

It's not looking good.......

oh and one more thing..... Ty has been on the potty now for 1 hour and 40 minutes..

. he is refusing to come off because we have a no video game before bed rule... and he doesn't want to put down the DS... .

wonder how long he'll stay on?

but it is not a good sign that things will go smooth after he gets off

not good at all

unless he of course falls asleep on the potty....yes that happens!

hmmm heads he falls asleep, tails he stays on for another hour!

either way- I'm going to bed!

Can I go to bed without any more "issues" tonight please?

I am blessed, I am blessed.... just keep saying it to myself... I am blessed!

but it was a rough night- I guess to be expected with first day back after a week school break for all!

But ugh ... between a major meltdown with Ty..... why? well Megan said football is stupid

and that sent him into tears and more crying, throwing up a little because he's crying so hard......

then into throwing....

before the throwing I thought this is good- he's sad, and crying over this statement..... and not hitting her over it...

and then the sadness got to anger.... but eventually all calmed down for the moment

until after dinner... then things started up again... and this time he locked himself into my room and went on a throwing destructive spree... ugh

then he calmed down again....

then our little Sarah who also has tummy troubles a lot..

was having terrible cramping.... crying, cramping, crying, needing tummy massage... more tummy massage... for about 45 minutes of tummy massage....

I hate seeing her so miserable- poor thing... she always asks me why this happens to her :( So this has brought the evening to a rapid close, not sure where the night went, still have chores to get done before bed, I'm tired,

okay, this is me whining...... these are not very fun nights........ yep whining again!

But I'm done.. thanks for listening! :)

I am blessed..... but right now, I'm tired and want to go to bed without any more "issues" tonight please!!

Feeling blessed.......

Just feeling blessed today... that's all!

Even if the day ends up going south....... I'm still very blessed in so many ways!

Hello December........ where did 2013 go???

Hello December first, I can't believe you've arrived already.

Why is it that life continues to pass by at the speed of lightening?

Another year gone by, another year still trying to figure out this thing we call, LIFE

Is it just me or is time just flying here?

But life most things, I will embrace, I will accept, I will continue to move forward and bring on the Holidays.

Let the whirl-wind begin......

and please please help our son get through this incredibly stressful, over whelming, difficult period of time.... and please give us strength to enjoy our good days, get through our bad days, and help our family enjoy this special season!

Let's do this...... tomorrow girls are back in school, Brian has some meetings this week, let's get focused and our mojo ready to get through these few challenges this week!

As he's right now getting mad and upset because big sister isn't going back for him to watch a commercial he wants to watch AGAIN...... yes, these are the days of our lives!! :) Hello December, please be kind! Thank you!

A post from The Life Unexpected Blog by Marianne Russo: Dear School Personnel, Community Members, Teachers, Parents and Neighbors

A post I wanted to share from : The Life Unexpected by Marianne Russo: Dear School Personnel, Community Members, Teachers, Parents and Neighbors 2013 22 May Dear School Personnel, Community Members, Teachers, Parents and Neighbors Posted by Marianne under Blog tagged acceptance, ADHD, Advocacy, ASD, Aspergers, autism, Bipolar, cerebral palsy, child medication, CSE, disabled, educators, gossip, guidance counselors, IEP, Ignorance, kindness, mental illness, Neurodiversity, non verbal, parenting, parents, PTA, schizophrenia, school administrators, self esteem in teens, special education, special needs, stigma, tourette syndrome, tourettes | 154 Comments letter To Whom it May Concern, I am the parent of a special needs child. I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me. Please do not pass judgement of me without knowing why I did not attend the school PTA breakfasts or community picnics. Please take a few minutes to understand why I did not take you up on your offer to have lunch or grab a cup of coffee. Although we see each other in the supermarket or at school functions, I don’t think you really ever knew me, actually, I can guarantee that you did not know me because just as my child was different, so was I. I was in survival mode to keep my family in tact and to give my child the best quality of life possible. I was presented with parental decisions that have torn me apart and kept me up more nights than I can possibly remember. I had spent most days of the week at therapy and doctors appointments and most nights up researching treatments and medication options. I was forced into isolation at times due to the stigma and misconceptions that are epidemic in our society. I became proficient at prioritizing my life and learning to let the little things go, to look at others with compassion instead of tabloid material and to turn a blind eye to the stares or ignorant comments. I did the best I could. I survived. I am one of the lucky ones, my child has blossomed and has exceeded all our expectations. I have now become strong, I have become confident and I have become a fierce advocate for parents of special needs children. The growth did not come without much pain and many tears but it came. So I ask you, please The next time you see a parent struggling with a raging child, a child terrified to go into school, a child making odd movements or sounds, a child that seems to be in a world of their own… .Be kind. Give a smile of recognition for what that parent is going through. Ask if there is anything you can do to help, give them a pat on the hand or offer for them to go ahead of you on line. The next time you have a birthday party for your child remember that their child has a hard time with a lot of sensory issues and social situations. Please send their child that invitation and know that more times than not they will not be able to attend but appreciate being included. Understand that in order for their child to go to the party they may need to stay for a little while and please make them feel welcome. When they let you know that their child cannot make the party consider inviting that child for a one on one playdate or an outing at the park. The next time you are grading homework papers please understand that their child struggles, some with learning disabilities others with the exhaustion of their disorders or the obsession with perfectionism. The Perfectionism is not necessarily to have the answers right but to have it “feel” right for them. They have spent hours doing what most can do in ten minutes. A paper returned with red circles and comments only hurts a child’s self esteem and causes school anxiety. Please understand that when they see the school come up on their caller ID their hearts sink, remember to tell them about all the gains their children are making as well as their deficits. Take a minute before that call and know that they appreciate all you do and want a collaborative relationship in their child’s education. The next time you are in the teachers lounge, please do not discuss their child. Please do not make negative comments about their parenting or their child’s behavior, it gets back to them and it gets back to other parents in their community. The next time you pass the cafeteria and see their child sitting alone please consider inviting that child to eat lunch in your classroom and be your helper that period. Consider working with a guidance counselor to set up a lunch buddy group in a different area. The next time they are at the CSE meeting planning their chid’s IEP know that they are educated, informed and confident knowing special education law. Know that they have found the courage to stand up to conformity and will explore every option to give their child the differentiated educated that will show their gifts and not just their disabilities. Understand that educating a child with special needs is one of the most difficult tasks a parent can face, know that the last thing they want is an adversarial relationship. Please show them the same respect they show you. The next time you are creating an educational plan please take into consideration that their child may have specific interests or obsessions. Foster those interests, instead of taking away that art class for a resource class consider adding an art class instead. Think outside the box, these parents do. The next time you see that child in a wheelchair unable to speak or control their movements, don’t stare, don’t look away, say hello. Do not assume that because this child is nonverbal that they are not intelligent or do not understand the awkwardness that you feel. Take a moment out of your day to show kindness, support a parent enduring incredible pain and just give them a smile. The next time your child comes home telling you how Johnny or Susie is so weird, take the time to teach about differences. Take the time to talk about compassion, acceptance and special needs. Please remember that your child learns from you. Be a role model, mirror respect and discourage gossip. The next time you hear a comment about how out of style these kids are, educate about tactile sensitivities and the fact that these kids cannot tolerate many textures and fits. Imagine what it would feel like to have sandpaper in your stilettos or tight elastic holding on your tie. The next time you see an out of control child do not assume it is bad parenting. Understand that many of these disorders have an organic basis, are biological and are real illnesses. When you hear the words mental illness, take out the “mental” and remember ”illness”. Know that it is this generation that can stomp the stigma and create a world of acceptance. The next time other parents are talking about “Those Kids” be our heroes, stand up for us. The next time you see a special needs child know they are not just special in their needs but in their brilliance as well. Take the time to meet our children. Take the time to know us. AFTER POST: Thank you for the tremendous response to this writing and requests to post or share on your blogs, websites or educator sites. This writing has been viewed over 150,000 times and I appreciate your support. Feel free to copy in its exact form and use author credits to comply with copyright without direct permission.

In the same minute......

I was just starting to post how amazing this moment we had tonight was...

How incredible it is to see all three of my kids actively engaged in one activity, having fun, smiling and laughing.

They were playing "balloon volleyball"..... you know, trying to keep the balloon in the air...

And I was a very proud mama watching this occur.... now this was about 2 hours ago..... and I thought I was in the clear to sit down, and gather my thoughts, and write about this proud moment.

And then in that same minute, my thoughts flew out the window and I had to quickly compose my energy to stop Ty from making an aggressive act......

It was calm, just before bedtime time, the girls are quietly watching a show, Ty was also watching for just a bit.... but then he started to get himself as we call it "all jacked up".....

meaning getting wild, which for him is quite a balancing act

He's a kid who gets so easily over stimulated, over excited, dysregulated that he literally cannot calm himself or his body down and things escalate into a behavior..

just as it did tonight....

So in that same minute, I sat down, then I was being threatened....

ugh... really-

and it escalated to a point that he was not coming back and needed "help" to calm down.....

I hate those moments... the one's where you realize, he's not coming down on his own... he'll carry through on his "physical threats, causing destruction"

But really, hours before it was such a nice moment. A moment that I've tucked way far back in my memory vault!!

That other moment, well, I try to put those in my delete file in the brain vault!

To say life is a roller coaster, up and down, spin around, jump through hoops, cartwheel through a grove of trees

well, that's an understatement! :)

My first born is 12........ and they had a conversation!

How awesome is this picture...... this is my Meggie boo- the sweet, creative, beautiful spirit- that certainly does her own thing......

and I love her self portraits- because it really shows her creative personal side of how she defines herself!

At dinner tonight, she choose to have Thai food, which we have never had as a family... and when Megan exclaimed how much she loves the wide rice noodle dish, Ty politely offered her the rest of his portion, and then she politely replied, Thanks Ty.

This is what other people call a conversation, and Ty and Megan had one.

Yes, pretty awesome moment in deed!

So here is to my Megan, my sweet kind and creative Megan, and we love you to the moon and back!

My sweet Sarah.....

The sweetest moment I've had today: watching Sarah play quietly by herself the game Mancala.......

I didn't even know she knew how to play

but I know she has watched us play it recently

She's so calm, so patient, moving the marbles from one place to the next, dropping one in the end as she moves them round and round the board.

And as I was watching her and then realizing what an awesome moment that is- seeing how grown up she's getting, now that she's 6 1/2.... full of love and kindness and still continues to make everyone who is around her smile!

I was just watching and watching...... and then she jumped up, screamed and ran off....

What just happened? That was so sudden

and then she screams "spider".... and was out of there.

This nice peaceful moment, we have music playing in the background, the sound of marbles moving around the wood board..... and then boom..... spider freak out!

I have to say, that was funny! Just absolutely funny.......

and now she's right back to playing the game.... moving marbles around the board, not giving a care in the world that she is playing it by herself, and having so much fun! Love that girl.... She really is the kid that always makes lemonade from lemons....

I know she teaches me a lot.... she's got good things happening in her future!

In that moment, they were happy.......

After the rough start to the day, I feel confident enough at 8:45pm that we will be ending this day on a joyous note!

The day was full of smiles, and I had 3 motivated children to "clean " the house so we could maybe put up the Christmas tree early.......boy Thanksgiving is late this year!

With them highly motivated, they were also successful, so I followed through on my part to get the tree out of the shed, and move furniture around so we can put it up!

What is it about a Christmas tree, lights, ornaments, that puts everyone at least temporarily into a good mood!

And it seems to weird doing it before Thanksgiving... but as this is day 2 of holiday vacation for the kids, it's not easy keeping them occupied, especially one sweet boy!

So we broke with tradition and put up the tree today.... and to watch them each ooooh and ahhhh over the ornaments that they remember from year's past, well, let's just say it's almost a tissue moment.

I loved it, and I love watching them talk about memories, and sweet moments of Christmas years past.

It's pretty amazing, considering what most of our day to day life is like.... but for that moment..... I just was glowing with the idea that right now in this moment, my kids are happy! That's pretty awesome!

Feeling frustrated

After what was a great day in the works, baking pies with all three of my kids-

each having a different role in the process, we were all smiling, enjoying each others company, talking about the holidays

it was a great day for most of it.

But I'm feeling frustrated because as great of a day as it was, it turned so sour last night.

A Sour that takes over all the goodness that did happen. A sour that makes us angry and reminds us we really have no control as parents.

That sucks!

An obsessive thought was intruding in his brain, taking over his calm self, taking over his ability to cope

And just when you think things have consistently for the most part been staying in this pretty amazing place, a place where we are breathing, a place where we are laughing, enjoying our moments, watching our kids interact together in such a positive way.

But there is always this lingering thought of when will this ride end?

What will be the "thing" that sets him off and he can't come back from?

He was up at 1:00am, went back to sleep around 2:30am, woke up again at 7:30am.......... and then BAM!

Started all over again.

Last night ended pretty bad, he just couldn't snap out of it, he couldn't pull himself back, and it continued until he fell asleep FINALLY!

It's going to be a long day if it continues. So far, after some behaviors early this morning, he did finally settle into the hammock, and seems to be calm right now.

By that I mean, not wanting anyone around, but that's okay!

It will be a bit of a walking on egg shells kind of day, but that's what has to happen to help so things to erupt.

He's like a volcano just smoldering, and then in another second boom!

But if we can just keep him at the smoldering state, then the day will be okay!

But I hate that a bad night seems to erase the amazing day we had.

But it's because the "bad" is "bad"......

and it's so trying not just as parents, but as people. And we see how amazing he is, and the kid he really wants to be..... but damn these OTHER THINGS just take over and don't allow him to just BE!

I want our good moments to define him, not a moment like last night..... and honestly it tells me we have things happening in his environment that he isn't handling, that are causing over stimulation to his brain, that are causing a disorganized brain that can't get a grip.

So today will be a hard working day to try and minimize what I see as potential triggers.

To minimize too many challenges right now because he's regressed and isn't in the same place he was even just yesterday - his body is feeling challenged, so we have to meet him where he is, and where he is at the moment... not where he was 10 minutes ago, or 12 hours ago, or 4 days ago.

We need to meet him where he is in the moment and try to help him through it.

Wow, this seems so simple as I write this....... and I guess in my calm mind I know this to be true, but the problem is when he elevates, it's a lot to stay calm ourselves. And especially elevates to aggressive behaviors, it's really hard to not react or to simply respond in the way our rational brain knows we need to help him.

But let me tell you, in the moment is a whole different thing. In the moment makes all this 100x harder, and it just sucks!

But as he just laid down, at my feet, obviously tired, curled up in a ball, I'm hopeful that his body will rest, and when he wakes up be more organized and the rest of our day will be all about purposeful activities to help better organize, and calm his entire being.

At least I hope so!

Do I have to get my button changed?

Do I have to get my button changed?

This is Ty's question to all things whenever something isn't the way it's supposed to be(according to his logic).

It's so sad, he hears Brian and I talking, and instantly says, Do I have get my button changed?

He came over to me this morning to tell me his button is oozing, I tell him it's okay after I just check it, and he instantly say's, Do I have to get my button changed?

This is something that is always at the top of his think tank, always present, always a concern, always in control of him.

And there is absolutely nothing we can do about it.

This is his reality, this is his routine, this is something he will have to deal with the rest of his life.

Can you imagine always having something like that that is always an ever present thought, that the minute something is out of sorts, your mind instantly goes there and tells you there's a problem?

It's not easy trying to understand it. It's confusing, it's complicated, it's something that causes him great distress.

And there isn't anything we can do about that.... other then listen to him, console him when he's upset, help him try to understand (the best we can), and help calm his fears.

It's always a presence, he's always reminded about it when it's around 7:00PM, it's after dinner, and it's time to go sit on the potty.... it's a part of him like any other part of his body.

but yet even though it's been 4 1/2 years, it's still just as foreign to him as the day he got it.

I do wonder if he will ever fully accept his button, ever understand it's purpose and importance, and ever realize how critical it is for his life?

.......

1:30AM wake up call

A 1:30AM wake up call from our little guy this morning. And for some reason, I just couldn't fall back asleep.

My mind started wondering, well, actually worrying is a better way to put it.

I could hear him moving about the house, I could hear him in the kitchen, I didn't know what he was up to!

I didn't want to get up, because I knew that would break up his usual middle of the night routine. It's wake up, get food (99% of the time a bowl of instant oatmeal), watch video in front of little heater fire place thing,

about 1 to 2 hours later, go back to bed.

This is pretty much ideal..... because we've had months and months of him waking up that early, and then waking everyone else up... which is not fun!

So for him to just be awake and do his thing, well, other then us wanting him to sleep, which we have absolutely no control over, it's pretty much the next best thing.

But in my woken middle of the night brain mode, I got myself all worried for some reason. Of course it really wasn't rationale.

But at the same time it's not that far fetched from our experiences in the past, not the long ago past.

So it was hard to get back into sleep mode.

I obviously eventually did, but not a very good one... more like sleeping with one eye open- which I kind of do most of the time anyway- it's just how things are here!

Love when old things become new again....

I hate the way I got out of bed this morning.

Ty yelling, Megan yelling, running around, screaming at each other, then at me.

Why? Who cares, I hate having to get out of bed to settle a dispute.

But moment is passed and I'm listening to them gleefully having fun playing Wii sports.

That's there old new thing. We've had Wii for years, and I guess it's that time of year, we are outside less, it's cold, it's been really windy, so I'm so happy they are playing Wii.

It's good for them. And I love that they are playing TOGETHER!

That makes me a proud mama!

A bad moment, is just that, one moment

Well, we had a pretty amazing moment last night.........

pretty amazing indeed!

They actually played a game, had fun, were within "touching" distance......

which in itself is amazing because well, let's just say being in the same room usually causes an uproar!

So this moment made me one proud mama!

Now another moment earlier in the day, one that was not so good, one that was out of anger

my little guy had a moment of lack of control over his mind and body and began to throw objects at me, which I was by the computer, therefore, object hit the computer and well...

we now have a non functioning computer! UGH

I hate when moments like that, which are truly just a moment in the day, but now we are a bit screwed because not everything on that computer was backed up... many of my photos, certain files, etc... you know-

way too much important information in a blink of an eye now completely inaccessible

and to say my husband is not pleased, okay actually freaking out- well YEAH!

because this one moment is now going to cost us A LOT OF money to try and remedy, if we can even fix this problem.....

oh the things that get broken, damaged, destroyed, torn up, in a moment of anger, rage, frustration.

I just look around my desk while I type this new post, and I see one, two, three, four, five.... broken items.... that I keep.... some of it is very special things to me, some of it I hope to "repair" at some point, some of it just now is garbage, which at one point was something I treasured, but in a moment became trash.

Those are sad moments..... and like yesterday's sad moment, it occurred in a blink of an eye, a flip of a switch,

and they suck because absolutely nothing we can do about it.....

I have holes in my bedroom wall and bathroom door, a hole in our kitchen wall, things put away because they wouldn't be safe to have out, and I used to keep most things away... but honestly I was tired of not being able to have "my things" out on display

it's one thing when they are little, but you look forward to those days where you can have more of a grown up house, with treasured items, with keepsakes, with things that I like for my house.

I know I could put EVERYTHING away, but I've come to the conclusion that is not living, it's not the way I want to live my life, it's not being very present, waiting for the day when I can bring my special things OUT of hiding...

That's just not want I want to do, it's not how I want my life to be defined... so I take the chance, I risk things, I hope and sometimes I'm disappointed, but honestly-

it's good for him to see my disappointment and sadness when he breaks something of mine in that moment of anger

it's good for him to eventually see what his actions have caused, what emotional response someone else has to his action.

When the sad/bad moment is over, he is affected by my sadness, he is affected by my clear disappointment that something of mine was destroyed....

can I get it back, no

can I replace it, sometimes but usually not

but when you have a child who has been so emotionally empty, emotionally unaffected, but is growing emotionally, learning about emotions, then honestly that by far is way more important than any item, thing, object,

I guess that's how I look at it....... and sure it sucks, but there are lots of things in this world that suck, and if it's one more way we can help our child, help him to understand (even if just partially understand) how his actions affect others,

well, that is just awesome!

So, computer may be broken, hope we can recover our data, but like all the other bad moments, it's just a moment and we have already moved onto the next moment.

Which he just woke up from a nap and told me about a dream he had.

A dream that he say's I made an awesome outdoor shower.

What's amazing about this?

Ty NEVER tells us about his dreams, he says he doesn't dream, (or he just never remembers them).....

But in this moment, he shared with me a moment of happiness he experienced in his dream.

Awesome!

My affirmation for the day........

What a wonderful day Ty and I had together yesterday..... full of togetherness

full of compromise, turn taking, and just existing and being present!

Sarah was home early from school and she and I made dinner together

She is a lot of fun in the kitchen! And amazingly helpful!

The day continued on in a good way, it ended in a good way....

And today started early, 4:00am with brownie crumbs all over the carpet

but things were okay..... just doing the things we need to do in the morning to get everyone off to work and school

and things continued to be doing fine, until he snapped!

Something out his DS and internet, and blah blah blah.. not sure and then the throwing began

and more throwing of objects at me, and the computer (which BTW seems to be having trouble now, not the one I'm currently using- but my computer- ugh!)

more objects to throw, him laying in "fight position" me reminding him of our lovely talk we had yesterday regarding his question "why do you have to pin me down?"

that's what he calls restraint, which I reminded him it's when his body is out of control and he is either going to hurt himself, or one of us, or he is going to be destroying our property!

It was a nice conversation and I was able to remind him, since he was in such a nice calm state, that we wouldn't have to do that if he stayed in control of himself and his behavior and when asked to go to the hammock or dog bed to "calm down" and he followed through with the request- then he doesn't need restraint....

I hate restraint.... he's getting so big that it's so hard, and really you're supposed to have 2 people - but I"m home alone so what option.

Yep, locked myself in rooms many times, yep, called Brian home because I couldn't gain control of him, and yep every avenue possible is explored in a blink of an eye and the quick check of the situation and what's the best scenario for me to be safe and for him to be safe......... I'm almost certain most other people have no idea what this is like.

What it's like to have a child who can rage and become so aggressive and destructive...... usually in a blink of an eye!

To say it's hard and sucks, just doesn't even come close!

And yet, underneath all of that is this most amazing intelligent gifted, boy

who we love and adore, but those behaviors are hard to deal with!

So, back to today after a wonderful yesterday........ yep, objects, kicking, and me trying to gain control of him to stop further behavior

Yes, ultimately things calm down, ultimately he's remorseful, ultimately he just fell asleep!

But I have to admit, after something like this, I"m mad!

'm frustrated, I'm sent right back into a bad place because I almost feel tricked!

He's in a good place today, why is he doing this?

Why did he flip, and there was no indication, no subtle hints to say "he's off a bit"

nothing...... and I guess the no warning is hard for me.... it catches me off guard, and I like to let my guard down!

Living with my guard up is awful, not natural, and exhausting........ and it's not good for me or anyone else in my family!

but I have to admit, it makes getting through a situation like the one that came up this morning, easier (if I can even say easier!)

I think it has to do with the jump in emotion, jump into a mode that is a bit like survival myself.... do what I need to to protect myself, my son, our belongings, (which is so not that important but at the same time it escalates behaviors if we don't try to eliminate property destruction..... )

bottom line.... I hate it, I hate when behaviors over take him, I hate that he struggles so much and I can't do a damn thing about it 98% of the time... why was he mad?

I don't know....

and nothing is ever worth the reaction that he has!

But it's over, I will let it go

I will continue on with the day as if it didn't happen, we will bake some bread today, we will play games, we will interact and laugh today!

We will move to the next moments and not look back

we will do out best to enjoy the rest of our day, together!

Because, it was just one moment out of many many....

and I will do my best to not let it distract me from enjoying the good moments with my little guy!

He slept!

My little guy slept until 6:40AM today.....

It has been well over a month since the last time he slept past 5am... and his usual is between 3am and 4am.....

Wow, it's so nice waking up in the morning and realizing, did he get up last night?

What was different, what helped him?

That will remain one of life's little mysteries

We have no idea and we stopped trying a long time ago to try and re-play for a repeat!

Doesn't happen....... it's just one night of sleep, that we take as a good moment!

Woo hoo!

And today we have rain, no behaviorists, and we will see what the rest of the day has in store for us.

But at least he slept!

I'm optimistic!

It's Monday once again... boy these weeks fly by fast!

With today came the first time in 3 or 4 weeks that Ty and I HAD to leave our bubble...

We needed to pick up Sarah from school (her ride was sick today...)

I was fortunate to have A the behaviorist with us for pick up- so Ty and her stayed in the car and played Pokemon cards while I went to get Sarah.

It was a great distraction, and was a huge huge help!

He did very well transitioning to the car, for the car trip -all of 1/4 mile...

believe me sometimes that can be the longest 1/4 mile ever.... literally I've had to stop 3 x on that route due to behavior..

so I don't take this positive experience for granted!

So pick up, trip back home, transitioning to a new activity were all successful! That's a big deal in my book!

I was very proud of him-

and I just hope between that little outing, no behaviorists T, W, or Th due to schedule issues- and Sarah on early out schedule all week....

That we continue this path of success, path of coping, path of continued calm nervous system........ I so want to be optimistic, I want to be so confident that these events are now much easier for him to tolerate (and yes it is all about him tolerating these events.... that's about as good as these things can be)

So despite our history on these types of events, I'm going to be optimistic and believe that these "typical setting events" will not be events that turn his ability to cope and deal with the world....into events that once again begin us down a path of dysregulation, inability to cope, intolerant, inflexible and an anxious ball of nerves that spins out of control! I"m hopeful! I"m optimistic! I know we can get through this week- without too much "incident".......

we can do this!!! We will get through these changes in routine this week!

He will be successful! I just know it!

Just what he needed.......

A very fun Saturday for me and the girls.

Lunch with my mom, who we rarely see and don't even ask me the last time I had lunch with her....

maybe when I was in college- some 20 years ago or so?? A long time ago :)

Then off to little cousins 4th birthday party- which my girls think is great because they are the "big kids"....

then back to the birthday boy's house for a little playtime....

Megan laughing and giggling that all these "little kids" want her attention so bad and she's loving every minute of it.

Sarah too is one of the big kids.. which almost never happens!

She just loves playing with her sweetest baby cousin, and it seems pretty mutual! :)

We stayed longer then I planned, and it was honestly so nice to just 'go with it' because that's just not the way our life rolls... it has to be rigid and it has to be as predictable as possible... and I did check in to make sure Ty wasn't sitting and waiting for me as he many times does...... that's hard to watch.

I may only be gone for 2 hours and he is there, sitting on the front porch just waiting for me.. which means it's cause a lot of anxiety for him

But things were fine at home, and I knew based on having a glass of orange juice thrown at me this morning,

he needed a very very very calm house today-

pretty much still recovering from the changes in routine that started on Wednesday.. and wasn't going very well

so these are the times that we know, minimize the number of people in the house, minimize external stimuli in his environment, lots of very good purposeful calming activities....

this is our recipe to help him

So the girls and I were gone almost all day... which I cannot honestly tell you the last time I was out of the house for that long... probably another cousins birthday party back in the spring?

It's been awhile.... and the girls were having a ball playing with all these "little kids", being playful, silly, and just having fun!

It was nice to see them having such a great time, and I had such a fun day with them, starting with lunch!

And when we came home, we were greeted with smiles, and the transition went pretty smooth!

Yep, us being out of the house all day, he getting one on one time with daddy....

Just what he needed..... and it has led us into a pretty good Sunday.

Which hopefully starts us on the right foot for the start of this week-

which has a change in school schedule for Sarah....

But hopefully we've filled his Calm tank up to allow some depletion without too much incident!

I hope! :)

They had fun.......

wow, wow,,,,,, wow!!

My kids never cease to amaze me..... and it wasn't just one, it was 2 that are the least likely to participate TOGETHER!

Ty just simply asked Megan if she wanted to play basketball... (it's an indoor hoop that hangs on the back of a door)

Now, Ty loves sports- all sports. Megan, well not so much.

In fact, if involves moving, she's even less likely to do it- she is hard to get active

And to then play with her brother- well this is just like winning the lottery!

So she agreed..... I think his face lite up like a xmas tree...... he loves to engage with her- she doesn't

And for reasons that are years in the making, Ty has always struggled to PLAY and has such a high need to control those that he plays with

and let's just say, it almost always never ends well

But last night, those two were having so much fun together. Megan was smiling and giggling- and actually playing

Ty was giggling and having so much fun- they were having so much fun!

I honestly couldn't believe my eyes and ears . And especially, for them to play something physical together- well, like I said, Megan NEVER wants to!

They are ok at times to do something on the computer side by side... that's pretty much how their interactions go, and occasionally they'll agree on a show to watch

/

This awesome basketball playing fun went on for about 15 minutes..... Sarah was cheering them on- there was laughter

there was silliness

and for me and Brian- there was an amazing moment for us as parents.

I have never been prouder of my three kids....... and especially of Megan and Ty........ some how, some way they figured things out!

And they had fun!

The slide, but it is just one moment

Well, I would hate to say that I could have predicted events from the past few days.... it would seem like I would always be setting a negative tone...

But ultimately I think too many changes in schedules and routines on Wednesday caught up to Ty's inability to control HIS WORLD!

And for the first time in many weeks..... I love being able to say MANY

he needed minor restraint right at bedtime- he was obviously tired, but started in with aggressive behavior and wasn't staying in control of himself....

I hate seeing him suffer this way...

I know that Wednesday was a challenge to his system, a challenge to his ability to regulate, a challenge to his world....

And yet there isn't anything we can do to prevent things like that from occurring.... IT'S CALLED LIFE

Could it have been worse, sure, and it has, a lot worse, but it's hard to realize the regression that happens, from what seems like the tiniest of things to the rest of us- but to Ty

it literally rocks his world, and not in a good way :(

So what will the next few weeks bring.... we have lots of changes in routine, school times changing for conference week, then it's Thanksgiving break, then Megan's birthday, and this is all before we hit December!

Well, I'm tired of thinking about it... or really, I don't want to think about it... I know we'll have moments,

both good and challenging

so for right now, I"m going to focus on getting things in a better place this weekend- lots of good calming activities, minimal routine changes (other then it's the weekend- )

and we'll just simply take one moment at a time- and do our best to stay calm in the meantime.......

too many changes......

How do your kids handle schedule changes, changes in routine, changes weather, changes in time, changes in other peoples schedules, changes in siblings schedules, changes in pretty much anything.

And pretty much, the one thing that is constant, CHANGE!!!!!

We have started to experience our little leaks in our bubble world... which of course is bound to happen- I mean really, how on earth can we absolutely keep things "one way" .....

well, as much as we try, we can't...... but unlike most other human beings, it does cause great distress in my son!

And distress in him, is equal to dysregulation, behaviors, inability to cope, struggles- outbursts, meltdowns, verbal aggression.... a completely disorganized little boy who is suffering.

And I hate that I can't control the universe to allow him to be the little boy he can be-

But as good of a run as we've had- which has been absolutely amazing...

When I say amazing- I mean..... we have seen our little boy be so happy and engaging.... calm,regulated, excited, a pure joy!

Now, don't get me wrong... behaviors occur, outbursts are still an everyday occurrence, verbal aggression still happens....

But the big difference is- we are able to parent him!

Parenting to his needs. We have had so many periods of time where things were so absolutely difficult, behaviors so out of control, nothing any of us did was helpful or successful: it was all about 'MANAGING' his behaviors to keep him safe and everyone else safe... he's like a spinning top- spiraling out of control... IT IS THE WORST TIMES IN OUR WORLD... IT'S SO DIFFICULT TO WATCH AND FEEL SO HELPLESS!

These are periods of time we cannot parent him..... it's so out of control- he's so out of control.......

But yep, the one thing that is tried and true that HELPS HIM more than any medication, more than any behavior modification, all the OT in the world....more than ANYTHING........

Closing down his world and minimizing all the external environmental stimuli.....

This is what we have known for years and years and years... and we've done what "all the experts say to do, try, etc.." and what happens.................. a chaotic disorganzied, inability to cope and deal with anything little boy! That's what happens.

So, here we are in the beginning of Fall. Weather has changed. Time has changed with the end of day light savings

Schedules are changing, meetings are occurring disrupting the usual routine,

Holidays are coming, birthdays are coming, more holiday festivities, xmas decorations, xmas lights, Santa, gifts, more changes in weather, more changes in other peoples schedule.....

How many more setting events can we throw his way!!!!

I saw a sneak peak of a change yesterday. Day was going well- but the behaviorist can a change in her schedule and was late by 2hours

Brian had a late night meeting and wasn't home until after bedtime

It was a Wednesday, which means Sarah gets home from school earlier then usual for early out day and Megan starts school later for late start day (yeah, sometimes tough to keep up with all the school changes :) )

And for the first day in quite a while, he got upset over me telling Sarah it was time to go inside..... Sarah and Ty had been playing so sweetly in the leaves- throwing them, jumping in them, racking them up... I love seeing that interaction.....

But this is something that he struggles with - transitions, whether it's Sarah deciding she wants to stop playing, or me saying it's time to stop the activity and move on... to blah blah.. whatever it is.... this is still a very challenging task for him- and usually ends in some verbal words that require him to "take a minute"..... but this time, he got angry at me...

and decided to pick up a stick and swing it at me... do I think he really wanted to hit me?

No..... it's his threat that he tries to use to control the situation... because ultimately it's all about control and him trying to control his world

But unfortunately compared to how things had been going- he didn't back down, he continued, and further aggressed.

Okay, he just stepped into new territory- territory we haven't been in for several weeks now... territory that starts to remind me of what our life is really like- and essentially we cannot control the universe.... to help him!

Luckily it ended okay, and ultimately he spent time in the hammock, and ultimately him wanting my attention became a bigger incentive than continuing on with the behavior....

But it is a reminder of how quickly these setting events, other peoples schedule changes, a simple late night meeting that daddy has....... really really affects him- and causes him to struggle....

Now, he recovered from it more quickly- thank goodness- that's one thing that is definitely a positive even when there is a behavior... his ability to recover is improved right now... but

we have another schedule change for today with the behaviorist, next week is a complete change in schedule for Sarah, then it's Thanksgiving break, then Megan's birthday, then December, then Christmas thoughts, ideas, activities (within our home of course, because I think you can tell going out doesn't happen :0.......)

More big changes in schedules, Brian is home for 2 weeks, behaviorists have schedule changes, girls are off for holiday, Lights, gifts, excitement, anticipation, and just after the first of the year... Brian is schedule for his surgery!

So, how many changes can happen and be thrown our way..... we will continue to do the best we can.... we will continue to help Ty through all these "changes"

and I just pray that we as a team are able to help him continue this streak of happiness, of smiles, of a playful little guy.....

Trust me, even on the best of days there are "things" that cause challenges.....heck, we aren't able to leave the house as a family- we aren't able to leave the house with him, one of us always always has to be home with him..... it's challenging to us as parents...

It's a very difficult balancing act... as if parenting isn't already a challenging balancing act... but imagine trying to do it and not ever being able to leave your house.... or knowing if we do........ what will most likely happen!

Yeah, it sucks...... and yet when it's the only thing we know we can do to truly help our son, it's easy at the same time..... but seriously, enough with the changes occurring... please universe stay in one place for my son!!!!! :)

Uninterrupted sleep please!

Things back to the old routine.

Girls back in school, Brian back at work, me and Ty home, behaviorists coming over as usual. Back to a regular predictable schedule.

Back to a quiet house for a few hours. Back to a focused day of meaning, purposeful, helpful activities with my little guy.

And even though it was a long weekend, full of changes in routine, full of unpredictability, a little more chaos moving about the house

it was indeed a pretty nice long weekend!

Ty and Sarah were really into playing together- and did a great job. Ty loves teaching her all about football, and she's a willing participant.

But even with things rolling along, I cannot for the life of me figure out why he is waking up so much at night.

He's regularly waking up at 2am all last week- he gets up, fixes a bowl of oatmeal, watches a little video, and then heads back to bed. Now, this is better then it used to be.

At least he isn't waking me up, or the rest of the house. We have definitely had the periods of time of this night waking and him thinking it's party time... and causing chaos and purposely waking everyone up..... that was not a fun time :(

This, well, he wakes up, (Brian helps him because it's dark and Ty won't walk into a room that is dark- so Brian turns lights on for him and gets him set up. And then goes back to bed

So the last several weeks it's been 2am, even some days at 1:00am or 1:30am- ugh

This morning Ty gets out of bed at 8am and tells me "well I got up at 4:00am- that's better then 1, 2 or 3am, right?"

well, um sure, I guess 4 is better then 1, 2 or 3am.....

But when I think back to when he was much younger- before we even had any diagnoses, when he was just a little guy, 2 and 3....... what did he always do?

He ALWAYS woke up around 2 or 3am...... crying, screaming..... and then would continue to cry for the next several hours,

This was every night.... it was so tough, and we got so little sleep- Brian went and slept in his "dedicated" room, and Ty slept in our bed with me

Brian had to go to work.... it was so hard sleeping so little, night after night after night- for years.... talk about feeling like you're going crazy- not sleeping - does that!

Ty would just cry and be inconsolable for 3-4 hours every night- the only thing that would ultimately help was me bouncing him vigorously on the big yoga ball.....but even that wasn't always effective, but the only thing that would some what soothe him.

Not exactly what I wanted to be doing at 3am- bouncing on a big yoga ball for an hour while holding my toddler.... and still being up for 3 or 4 hours every night-

oh and then having to get up to get Megan off to school.

Those were really tough times and really tough nights.

But that is what is so puzzling to me.... because he's done this night waking thing more years in a row then actually sleeping well. We've have good periods of time (all were before he started school)

But we have not been able to ever consistently count on sleep, consistently count on him not waking up and wandering around the house at night

and even if he's not purposely waking us up...... him wandering around the house, fixing himself food, well it's not a time I can easily just fall back asleep, until I hear him crawl back into bed with Brian.... and so I"ve lost that sleep too.

It's funny, Brian can sleep right through it all.... but I can't... I think it's back to that whole mommy / daddy thing when you have a baby... and how mommy's can't just ignore different cues the baby gives.. heck I can't ignore cue's other babies give... it's such a maternal instinct to help a baby.... soothe a baby, comfort a baby... where as for dad's, well it's just different and I don't think anyone will argue with that!

So this whole night waking, not sleeping through the night, waking up and eating something- then about an hour later returning to bed is puzzling me....

and even with reinforcements, even the rare one time he doesn't wake up and sleeps all night, well...... never consistent.

the only thing that is consistent these days is his night waking.... and whether it's 2, 3, or 4am...... it just happens.

And it's happened more times then not throughout his entire life.....

But with the days we've been having, with him waking up and not waking everyone else up, what are we to do?

It just is, what it is..... and whatever the cause is, it is stronger then any reward, incentive, threat, plea, that we may do.....

It is what it is.....and pretty much there isn't a damn thing we can do about it!

It's just like the picture I have posted above on this blog.... Autism sleeps, just not where or when we want..... that is so true...

He naps more often then not.... regardless of the situation.... sleep just over takes his body at some point.. and that's it.. he's asleep..Very much like a newborn- where boom- they're out like a light

We just have to nurture it, accept it, and allow it to occur..... he's a kid, a growing, developing, little boy that needs sleep....... so when it happens, we just let it happen.

But seriously, it would be nice to have at least a few nights in a row of uninterrupted sleep..... just a few.... we don't have a high bar of what we expect.... but just a few, and in a row..... please!!!

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!