My golden moment

The days just seem to be flying by!

Is it just me or wow... wasn't it just July??

Gosh, Halloween is almost come and gone then onto the Holiday season

then the new year...

and.. well I just want everything to slow down , even just a bit!

As wonderful as the holiday season of Thanksgiving, Christmas, New Years (those are the celebrations we have in our home)

but wow... slow it down!!!

On a different note, and fun Halloween, I made Megan's Peacock Tulle no sew skirt for her costume today

I"m loving it.. and it was so so easy!

And although the morning with Ty wasn't horrible

his over reaction to "things" got my focus elsewhere until he could better pull himself together (boy he was overly tired!)

and as I started to work on Megan's skirt, he got his own creative thoughts pumping through his brain and "created" a costume for Oliver, made Sadie a Zombie, and well had fun with the dog Halloween concept

which allowed me to finish Megan's skirt- and well, that was quite nice!

Not having behaviorists come into the home any more certainly doesn't allow me any time for myself (not even to go to the bathroom by myself, maybe that's TMI, but my kid is at my side ALL THE TIME!)

So, I know this is the best thing for him right now, but it can and is down right exhausting

all the time!

So for me to do something of my choosing, even for 20-30 minutes, and without him freaking out on me

well, that truly is a golden moment for me.

and I"m not one that is well, one that has typically gotten "me time" or has even been good about setting time aside for "me time" and I guess after almost 13 years of motherhood, 16 years of marriage, it's just not a huge "worry" in my book- sure at times it would be nice, sure at times I desperately need it

sure at times I wish the world was one in which I am just simply granted a little R and R without having to step back into the world and still having to take on the things that went wrong while I was out, or have struggles upon my return because transitions are still very difficult and at that point all things are null because it's just too hard to handle the transitional behavior... so you know, it is what it is.. so when I can get my little guy to maybe possibly, even for just a little bit of time get engaged with an activity that I choose, or I like to do, esp if it has to do with crafts, or something.. well again - a nice golden moment for this mommy! Now for all those that are thinking, I should take more time for myself, I'm going to burn out, blah blah blah.. yeah I know all that and more, Yeah I've heard it over and over like a broken record

and as I always say to my hubby, I wish more "professionals" "people" would ask how my son is doing, even half the amount of time Brian and I are asked "how we are doing" ....

that is a pet peeve of mine- don't worry about Brian and I, we are adults..

now my son, yeah be worried for him, help us help him, seems like all too often it centers around "us" and not on "him" and that is frustrating since we are still constantly trying to gather info and resources to better help him

so again- I liked my golden moment, I liked that my son participated in it with me

and that is just that.... my golden moment!

Our creations today

Almost two hours of awesome Lego time with my boy...and look what we both made.   And as the start of actually documenting for school purposes...we both made presentations to each other on our creations and details of them and what specific things do

like ladders that go up. Or like mine was a research vessel and took people shark diving.  Fun time with him

My first pumpkin latte

'Tis the season to try something new..... a pumpkin latte.   Happy fall

Playing

Day3: After a rough start to this morning, things pretty un routine

Megan staying home for just a bit due to a headache- it really threw Ty into well, a bit of a fit

But finally things calm for now..

in fact, he's engaged with Lego's right here by my side

playing in a world of helicopters, trucks, and little Lego men

and I don't dare interrupt him

I know the moments will end sooner than I am ready

by his own doing and own "ready for the next thing to do :

But for now, I'm enjoying peeking out of the side of my head, catching glances of his sweet play

reminding me of why we do what we do

It's meeting him where he is at in this moment

but seeing him

play, create, build, and re build

and interact with his lego scene as if he is a apart of it

that's how a little boy should play

nothing else around him distracting him

just pure focus on "playing!"

Day 2

Day two: not much to speak of with day two trial of new med

But that could also be good because hoping for no adverse effects

that is first and foremost

it's such a low dose that lots of room for bumping up as long as he's tolerating

So, the "no news" is also possibly "good news"

too early to tell, but no matter what

one positive from yesterday was

Ty deciding and agreeing and following through

on taking a shower!!!

Thank goodness.... he took a dog in with him

and he and Oliver both came out sparkling clean smelling good!

That's just a plus in every way!

Everyone deserve at least "one positive" in a 24 hours period, don't you think?? !!! :)

Day one

Day one of a new med: Namenda, Memantine

Starting off very low dose (having to split a capsule, not exactly easy)

Hoping for no adverse side effects, and then if necessary we can bump up dose in a week or two

Fingers crossed, and I hate thinking - a medicine could be helpful.. because so many times it just hasn't

or he reacts negatively to it, or has too many side effects to get any benefit from the medicine

But admittedly, this one is different, a different pathway in the brain, but with his positive experience with Ketamine in the hospital

and our anesthesiologists recommending we ask about it

well, gives us a little bit of hope

because all the "therapies" in the world don't mean jack if brain chemistry totally messed up

and that's where we are!

So, it's day one.....

advocate, fight, love, hope, listen.......

We advocate, we fight, we love, we hope, we listen, we pause, we reflect, we hug

We advocate, we fight, we love, we hope, we listen, we pause, we reflect, we hug

and after 10 years of advocating, of fighting, of loving, of hoping, of listening, of pausing, of reflecting and of hugging....... we have reached another level

a new understanding, a path of compassion

and that's exactly what Ty needed, what we wanted for Ty

and absolutely what he deserves from everyone