Warming my heart with noodles!

After the behaviorist left today (which it was an okay time with her today, a little up and down for him, but he dealt with his frustration appropriately and recovered fairly quickly!- victory!

Anyway, after she was gone, he said he was hungry. And that usually doesn't mean he wants me to fix him something, it usually means he's going to barrel through the fridge in search of an idea to have (however it's always a sandwich and or potato bars).. but he thinks about something else (or pretends to)...

And today, he grabbed the leftover noodles and said "how about macaroni and cheese?"

Well, sounds good to me!

So he also got the Daiya cheese (it's fake cheese since he can't have dairy.. but it's actually quite good!

anyway, he warms it up in the microwave... and then called me over to the table.

When I walked over to the table, he was sitting on the bench, with a bowl of the warmed up noodles with cheese on top, and two forks.

He said "you get some"

I asked him if he's going to share his meal with me?

He said yes, we can share the bowl

Yeah, kind of an awesome moment. Awesome in deed!

Sleep picture of the day-

Sleep picture of the day ( I think this is the first for 2014..)

. My husband was asking where the sleep picture of the day has been, so here it is! He is so sweetly snuggled between the two dogs...

Behavior is communication- important reminder!

Hard to believe, or maybe not, but he spent this entire day once again ignoring Behaviorist!

It is out of refusal to do what "she wants to do".. which of course is one of the goals- do something that someone else wants to do for 1 to 3 minutes... and then transition to the activity of his choice.

Most days, it's fine, no big deal- but it's certainly been a rocky road back after his hospitalization, Brian's surgery and starting back into our routine.

This is not a new goal.. it's a goal that has been in place since he started services 2 years ago... but still not mastered by any means.

In reality, it comes back to how regulated is he? What challenges can he tolerate? How will he tolerate requests... will he be aggressive?

Will he use verbal insult towards the person?

Will he escape and hide?

or will he comply?

On any given day, any one of these can happen - that is one thing that is consistent with him, he's not consistent!

But it gets back to how regulated is he? What's been going on around him? Is he showing flexibility, calmness, ability to cope?

And as we had a great weekend, Tuesday was certainly an indicator that he wasn't well regulated... and he's had moments of aggressive behavior, but luckily didn't escalate and took his calm down time in the hammock.

Now today, again different, I've been punched in the arm, and when I tried to talk to him about dinner tonight- he threw a remote control at me- and it hit me right in the wrong spot on my ankle... yeah it hurt!!!!! So, regulated, most definitely not!

Does it look good for the rest of the night?

Not particularly.... and it's this up and down up and down cycles of moods, behavior that honestly

gets me exhausted!

Behavior is a form of communication- we know he lacks in expressive language skills, he is very much like a 3-4 year old (sometimes worse)... so in my mind I'm thinking he is telling us to back off, he can't tolerate whatever challenges he is experiencing (unfortunately we don't always know what's challenging him because he is not able to tell us- and he thinks we know).... but this is the time of night that is a challenge

Food, smells, family gathering together, noises from cooking, talking, after meal is potty time, teeth brushing time, ... these are all things that we know challenge him, and sometimes he gets through it like it's no big deal, and other days, well its a day like today!

So, I'm hoping he doesn't want to eat dinner at the table, I"m hoping he just slips into the kitchen and makes himself a sandwich (as he does anyway), goes back into the family room to eat- calms himself, stays a little bit away to prepare himself for the rest of the evening events that have to take place!

But for some reason, I highly doubt it!

The day after our uneventful Monday......

Okay this is attempt number 3 to post today... computers being funky, the weather is being funky, well... here goes attempt number 3!

As I"ve been trying to say, uneventful Monday did not carry into an uneventful Tuesday.

Morning started as usual, well a usual morning where the tooth fairy had visited the night before because my little boy who hasn't lost a tooth in almost 2 years now, pulled out a tooth... it was loose (I personally didn't think it was very loose at all- but it was enough loose to bother him and so he pulled it out- that's my boy!;)

Anyway, this happened Monday right at bedtime- he woke up, yes in deed tooth fairy paid him a visit- left money under his pillow

so he spent the early morning counting all his money! Now if that's not a critical skill I don't know what is.... so just keep on counting!

And then as he does, he organized the money into piles of one dollar using all different coins.

Again, awesome skill-

then he proceeded to put them into little baggies, organized- picture below:

Then it was almost time for L the Behaviorist to arrive- so Ty gets himself ready .. his latest "greeting" is to spy on them and to take pictures of them walking up to the house and then surprise them. Yes a bit creepy I know, we've been talking to him about taking pictures of people without their knowledge.. and I had to put a stop to the random picture taking of the mail man and people walking up and down the street. I'm sure it is creepy when you discover a little boy with a camera taking your picture, anyway- trying to instill some social boundaries for the future anyway!

So, this is his latest thing- and he gives me a "script" to say when I open the door-

He greeted her finally, and I"m not quite sure what transpired from this point exactly, except L wanted to do "X" and (on purpose it's a not preferred activity- that's kind of the goal- have him participate for 1-3 minutes in a non preferred activity- I know, high bar... and he refused. So behavior plan is to wait it out.... and 4 1/2 hours later- he continued to ignore her and go on about his day.

But the funny part, ok not funny, but this is the weird world we live in, he ignored her, he didn't agress, he didn't do verbal insult, he ignored her for the most part- every 4 1/2 hours, and entertained himself.... this is the weird part- I was proud of him... it could have been really really bad, or just a little bad- but he just went about his time and did what he wanted (I know, it's again this having him participate in something for 1 to 3 minutes that he doesn't want to do... it's a big deal..... ) Anyway- so after 4 1/2 hours, she leaves and he's glad- which is fine... never said it's gonna be easy- heck it's far from it everyday for this kid... but he also made the good choice of ignoring her... how many times do I say this to both Megan and Ty.. ignore each other!!!!

But it's also a sign.

A sign that he's not tolerating much today, his threshold is lower and later that night it definitely is a low tolerance level for others... including potty time!

He didn't go on to the potty until 8:30pm... 8:30pm... is really really late and that means he won't get off the potty until almost 9:30... and I"m tired, Brian's tired.... ugh...

so that was the Tuesday after our uneventful Monday, and I"m hoping to get back to an uneventful Wednesday... so far so good for the most part- but I have a school meeting tonight for Jr. High... that throws all things out the door... fingers crossed Wednesday continues to be pretty uneventful... but until that boy is sound asleep, head on his pillow, in bed, snoring..

... you just never know!

Being present on this uneventful day

Nothing could top my awesome mommy moment from yesterday... the Bacon in your burger moment....

And it's weird, it's a Monday, girls at school, Brian's at work, behaviorists comes over as usual- and it was a pretty uneventful day.

I can't believe I"m saying that.. uneventful... in this case, that's a really good thing!

Ty and I even made dinner (this afternoon) and something new- which he tried, and simply stated that he didn't like it- so he proceeded to the kitchen to make himself a sandwich.

Again, uneventful, just matter of fact, doesn't like it, and moves on from that moment!

I'm liking today.... I really hope tomorrow is another uneventful day! It feels kind of like, just being in the moment.

Just literally breathing with each breath, and being present. This is certainly not typical in our day to day... it's just not.

But when it is, wow it feels amazing!

"Bacon in your burger" song brought my kids together

By far this has been an amazing day. Not because everything has gone even close to perfect, not that there wasn't behaviors (although they were pretty minor-yeah)...not for any reason except

today is the first day since before Brian's surgery (back on January 6th) that Megan and Ty actually had a connected moment!

And not only that but Sarah got involved- and this moment lasted about 15minutes...

I could hardly contain myself, I was just grinning ear to ear (without disrupting the moment of course) and

Brian and I secretly in the kitchen smiled and acknowledged this moment knowing it's been so LONG since we've seen this!

And I caught part of it on camera.... The behind the scenes is the two of them started being silly about the new Jack in the Box commercial (my kids know commercials, like they know their names... a gift for memorizing odd details indeed

And they cannot stop singing this bacon in your burger ad... but the best part was their participation together - sneaking into our room, closing the door, giggling, and literally planning the performance of this silly song... and then when Sarah wanted to get in on it... they didn't push her away, they included her!!!

Okay, here is a captured video of this incredible moment we experienced today.....

sorry it's sideways.. can't figure out how to turn it.. but this was by far an awesome day for me as a mom!

Togetherness...... with pizza!

Yeah, we got through 7 and now even 8 days without aggressive physical behavior!

In fact... although Brian had to work this morning... we had quite a cuddly morning!

And when that was over, Ty had cooking on his mind once again! So I set him up on the computer to the food network website- with the RULE to not leave this website (yes, we've had issues in the past so rarely does he get to be on the computer unsupervised - I was just in the other room, not far.... and we have several rules in place with no strikes )

So he found 50 things to do with Bacon on the Food Network.... have I ever mentioned how much my kid loves bacon... well, he does A LOT!!

So he so patiently found a recipe he wanted to make- Bacon Pizza... awesome plan! We'll make our own pizzas for dinner...

So he so calmly wrote out the recipe, which is pretty awesome, and then made our grocery list.

Can you say adorable... and I was so proud of him...

The day continued, Brian got home from his meeting, and finally it was pizza making time.

This was by far one of the nicest family evenings we've had, well this year (I mean since starting 2014.)

It's been a long time- and it was simply just nice. We all sat around the table, putting the toppings, sauce, and whatever else each of us wanted to create our own special pizzas! There was no yelling, no rudeness, everyone was just busy making their pizzas!

It was nice!

And they were absolutely delicious! It was certainly a very nice way to spend a saturday night, as a family, together, doing an activity, together, enjoying the moment, together!

The good deed....

Why is it the good deed of "getting dinner"....

and even ask what each person wants (because I"m getting it from the local awesome grocery store that has many different things to choose from) and yet even with the first choice and a second choice.by Ty (california roll first, smoothie second)......

his world collapsed!

So, mommy got to eat a bowel of cereal for dinner....

because luckily my choice of a gluten free bread sandwich BLT was something quote "he didn't know he wanted".....

So our almost disaster evening recovered luckily...

but still at 8:30pm... he's refused to go on the potty for his flush.......

But if we get through tonight... it will be 7 days without physical behaviors and aggression that required restraint....

Maybe I should just go to bed now ...

Lego's- an awesome teaching tool

My morning coffee routine has been happily accompanied by some serious lego building!

I personally consider lego's one of the greatest educational teaching tools.

A few days ago it was about building a giant dragon raptor with the world's largest wing span. So, a lesson in physics and engineering! .....

He made it have a wing span of 4'3" before the wings collapsed, which he then clearly said, 'I need to give it better supports.' Okay!!!!!

This morning he had his Lego book out- reading, yes reading about other things including the question "the people who build these are old and always like in the U.K."

I simply asked him if he knew where the U.K. was and what it stood for..... his answer, a quick no then he quickly jumped in and said "United Kingdom" and then I added England..... then he continued on with his building, perfecting, ever changing ideas.

So he has built using an idea from his lego book, a car building place (as he called it)..... complete with robot arms, conveyor belt for the assembly line, one person running the machine, a hoist to lift up the car....

and the one thing that made me most proud...... and this could honestly be one of the first time's- he got the idea from his lego book, but put his own imagination into the creation using the pieces HE HAS... which are not exactly like the one's in the book... especially the colors (I don't know how they have so many pieces of the same color, anyway)

This is a big deal in his world and the fact that he pointed out the differences of his creation and the one in the book.... well, that's just awesome and he was proud of himself!

I love lego's, I love what they do for Ty. Seriously, they are an awesome teaching tool....... again, formal education- eh over rated! :)

photo story telling from the past 5 weeks

Once upon a time, (but this real and not a fairy tale)

THE END!

3 words to sum up the last 5 weeks.......... WE DID IT! (oh and hospital, kidney, bonding) read on

Hello.... yes a bit of a holiday from my blog.. Every time I sat down to write something, I found myself overwhelmed, emotional, and honestly just too much going on in my head from this whirl wind of the past 5 weeks.

A quick summary: Christmas holiday, New Years holiday, Jan 4th Ty begins experiencing major symptoms of bowel blockage (which requires hospital clean out- after all, it had been 8mo!!)

January 5th - preparing for Brian's big surgery day.

January 6th, Brian leaves at 5:00am for the hospital (I wasn't able to bring him, we felt that early morning was too much disruption for the kids and their routine- so his other sister picked him up and brought him)

It is also first day back at school for the girls after Winter break.

Brian so bravely is in surgery, donating a super awesome kidney to his older sister..... Megan goes off to school, I kept Sarah home for ease of all that is going on

So Ty, Sarah and I try to occupy our minds, think positive thoughts that all is going well for Brian!

It was hard not being there with him- okay, I"m getting distracted and emotional again... I'm going to try and keep this less emotional and more systematic.... otherwise I don't think I will get through this :)

Brian's sister (the one not receiving the kidney) calls me regular updating me..... it was a 5 hour surgery.... that was a long 5 hours!

Meanwhile, Ty has continued to have major symptoms- vomiting when he eats food, and if he drank more than 2 oz.... yep, vomiting again..... so he wasn't feeling well at all..... this now had been going on for 4 days- but in my mind, I know what he needs and we just need to get through this one day.... know that Brian is healthy and doing well and then I can deal with what we know to be necessary for Ty- hospital clean out....

Later Monday I get to visit my husband as he's waking up from surgery...... to say that was emotional is an understatement. But I"m so glad I was there with him- just holding his hand.

Tuesday arrives, Ty continues to be pretty sick - and I am instructed to take him to the ER.

Not an easy feat by any means- needless to say, once we arrive, they are not able to do the clean out until Thursday- so I decide to wait it out at home- he's stable enough and would be much more comfortable to be home.

Thursday comes with anxiety and anticipation- but the pre meds for Ty work! I am able to get him to the hospital for his clean out- and boy do I love love love the peds surgery center! They took great care of him as usual.

So, while Ty went into surgery for his clean out, I went down the hall and up the elevator to the 8th floor where my husband was lying in a hospital bed, recovering from donating a kidney. Yeah, again pretty emotional for me.... I am doing this all by myself and everyone needs me to be strong- so I am when they see me.

It's the in between that I fall apart- I swear there wasn't enough distance between Brian's hospital room and peds surgery center to feel relief .... so I did at one point just sit in the hospital lobby, by myself, my face buried in my hands. I just couldn't take one more minute- I had to relieve some of this so that I can then put my game face back on and be there for Brian and for Ty.

So they were discharging Brian this same day, and I was trying my hardest to listen to what the discharge instructions were, meds, all the critical information when bringing home a patient who is still recovering. To say I was nervous about him coming home so soon- well, yeah, nervous is one word, scared as hell is another!

I go back down stairs to be with Ty, he is waking up from anesthesia- he's stable and doing well.

Fast forward, I am set to bring Ty home by 5:00pm.... Brian is set to head home at the same time..... okay- this should all be interesting is all I could think of!

Brian's mom brings him home and they get to our house at 5:15pm... I arrive home with Ty at 5:30pm..... we walk in- something is burning on the stove leaving that old yucky burning smell throughout the house, cousins are over, sister in law, Brian's parents,.... well, coming home to a calm home was far from that... and Ty instantly has a visceral reaction to that smell and says "ohhhh gross what is that smell" and then says he doesn't feel good (he had already vomited in the parking lot.... this happens almost always after anesthesia with him, despite the meds......so I still have a recovering sick boy, I have a recovering husband and a house full of people that I know are all so well meaning.... but it was a lot and I myself was struggling to "hold it together"..... how do you politely ask people to leave when they are just trying to help.... but Ty was still vomiting... this pretty much sucked!

Little by little, company left, little by little, things calmed down, little by little, we took some breaths and just sat! The girls were wonderful and helpful- this could not have been harder I"m sure for them.... pretty much either fending for themselves, or being watched by Aunt or Uncle (which I know they loved), but still not an easy time for them! They are pretty awesome girls I have to say- I was incredibly proud of both of them for just really trying their hardest!

Okay, fast forward- it took Ty about the next 36 hours to feel better finally. Brian was still recovering, but little by little doing better then the day before. Would sometimes do too much, and then would regret it because his body would certainly communicate that message to him- by hurting!!

Okay, again fast forward, bonding time between Ty and Brian was sweet to watch- they were both just starting to feel better, so lots of cuddles, lots of xbox, and more cuddles!

Behaviorists had not been at our house during all this because Ty was not feeling well- he starts to feel better, then the following week, Megan comes down with something- fever soar throat thing..... so she's home from school, Sarah is at school, I'm getting to take Sarah to school and pick her up since Brian is home and Ty is exhibiting much calmness (so I feel I can leave Ty and Brian unattended for little bits of time)! I'm free..... that's kind of what it felt like- it had been so long. I had to run errands, go to grocery store, pick up Sarah from school. It was weird!!!

Brian continued to recover, Ty was feeling better and beginning to, well be Ty- and I mean that in the most loving way, but he was certainly struggling with all that went on by this point!

Megan after 4 days feels better and then Sarah comes down with the same virus - causing pink eye, and croup... yeah, this is life-

So she's home from school and I am washing all things so no one else gets the pink eye... and she stays home from school for 4 days that week until all things clear up ( btw did you know you can't treat virus causing pink eye with antibiotics... it's a virus, not bacteria... school doesn't like that I can't treat her and just bring her back after being on meds... oh well)... anyway- she's had this a few times in her life, it's basically the cold has gone to her eye, but she recovers and luckily no one else got it!!)

Okay, I'm trying really hard to fast forward my 5 week saga- it's hard! Finally Sarah goes back to school, Brian goes back to work part time on that 2nd full week of being home- and then he went back to work full time on the third week post surgery!

Pretty amazing is all I can say. He continues to do wonderful, his body lets him know when he's done too much and the fatigue sets in sooner then pre surgery.... Beth the organ recipient continues to do well also, and is getting stronger and stronger every day! It could not have been a better outcome- and honestly I'm still amazed at the entire thought- take one kidney, put into another person- and waa laa, two healthy people... despite having one kidney each!!! Can you say flippin' amazing! And awesome!!! And nothing can be more delightful then to see this occur for two people you love! A miracle most definitely!

Okay Brian has been back to work now going on week 3 (where the hell does time go), behaviorists are back in the house, routines are being resumed, girls are in school, life is returning to normal?, our normal?, a new normal? Heck, I'm not quite sure what it is- we're certainly still adjusting... but Ty and I are home all day with the behaviorists, Brian takes Sarah to school, Megan takes herself to school, and I have a few different people who so kindly bring Sarah home from school for me.

My day is filled with working/playing with Ty (it's all purposeful behavioral program stuff), but also enjoying our time when they leave (like last night he and I made Thai food for dinner- pad Thai and Chicken satay- he is pretty amazing!

After all our construction (which btw was crazy but a very nice distraction from all of this so that not every minute of everyday was consumed by well, all this other stuff going on- it was pretty minimal as far as how we were affected by it- thank goodness!!!)

Anyway, now it's moving into our new master bedroom, organizing, rearranging furniture, and my favorite part - re doing furniture the way I want it to look!!! Megan has helped me with some of this- I was teaching her how to distress furniture- I very important skill in life of course !! lol.....

Ty will occasionally come and participate, especially with the sanding, and well, it's my outlet, it's my joy, it's what I like to do- because otherwise, it's pretty hard staying home 98% of the time due to your son not being able to tolerate the outside world.....

and right now, we're just getting him back to tolerate all thing within our house... it's been a pretty rough transition for him (and us) with Brian going back to work, behaviorists challenging him, and just getting back to a calm enough state....

but we're doing it!

And all I can say after 5 weeks have passed, and the anxiety of knowing what was to come and not knowing how the heck little individuals would handle, tolerate, and be able to function through it all, how I would be able to deal with it all on my own at some points- especially when Ty was in the hospital and so ill himself...... I can honestly look back, say to myself, we did it! We got through it- we all got through it.... and as hard as certain moments were- we still got through it!

We always do, and I know this because let me tell you how strong my husband and I are- well, we're pretty damn strong - but maybe now you can see why it was too difficult for me to sit down and write about my experiences while going through them still. I just needed to keep my adrenaline UP so that I could help my family, emotionally and physically help my husband and kids, and get through it all (more like a robot more than anything... not time to break down!)... just DO IT... so I DID IT!

But I'm pretty glad to be grounded a bit now, to getting things back on track within our house, to spend sometime watching a show with the kids... one of my most favorite times of the day- watching our night time show- (usually Good Luck Charlie).... it's what we do.. and I love love love that Ty has been wanting to watch the show with us.

And now that's all behind us- and I won't dread trying to sit down, and ponder my thoughts on where to begin- there's so much and my adrenaline for the most part is back in check :)

I look forward to sharing some of my latest furniture projects, especially my new love for milk paint! OH Milk paint is so fun to work with... and Megan has a new room to make her own (our old room) and a bathroom- so lots of old new projects coming up... and I promise you there will be lots of milk paint, distressing, and colors! Can you think, purple, turquoise, lime green.... oh so fun.. and then it will be little Sarah's turn (well sort of, I told her I would paint furniture for her- but not the walls- they are already fun colors with fairies and frogs!!

Well, lots of upcoming projects, the weather is starting to feel a bit like spring (despite completely jumping over winter with no rain here in California)- so here we go!