simplest of things, just isn't

My boy wants so badly to go the pumpkin patch!

I want to so desperately take him!

But I am not confident even a little bit that he will be able to tolerate it!

He had a good day, he slept a lot which tells me his system is right now in a "recovery mode"

it just is what happens to him

but still during transition of Sarah coming home

she and I had to walk!

Walk down the street, away from his threats, his verbal aggression, his raising fists

so despite him wanting so badly to "earn" the pumpkin patch

the simple thing is he is not in control of himself

period!

And even if he tolerates the 30-40 minutes (because experience has always told us leave on a good note after about 30 minutes...

anything past that, well, it's anyone's guess how things will end!

so even if he tolerates that brief time

what will the rest of the day be like

What will he be like!?

It is too difficult when he becomes physically aggressive, so much that it's not worth it

I want to take him

I want to enjoy a very special outing, and I want him to be successful!

But this week, the past weeks, right now, I do not believe he'll be able to do it successfully!

And that's just not fair to him

He has no connection to what happens to his body during anything even remotely stressful to his nervous system

When he's aggressive, verbally or physically

he is completely out of touch with what is happening to himself, to his body, his behavior, his actions

fight or flight is almost an alternate universe

sending him beyond what he is able to handle appropriately

sending him to react as if he is being attacked, as if he is being threatened, as if his entire being is being assaulted by his entire environment around him!

How do I protect him , from himself!

How can I possibly take him somewhere, when I know darn well, it will end up causing him to "react" and cause him to behave in a way that is completely out of his control- he's not there when this happens... he's just not there!

I want to take him to the pumpkin patch, but I also know there isn't a thing I can do to help him when (not if) when this happens

and I don't want to get hurt, and I don't want him to get hurt

Right now, it's literally dropping him out of the nest without wings to fly- no tools, no ability to reason and come up with a plan to survive other than panic and fight with all his might!

How can I possibly put him in this position, knowing this is the outcome

This sucks- because the simplest of things, is

not that at all in our world!

It's just not that at all!

What a day....

Man.... over 3 hours spent at GI doctor's today - for littlest.... wow she has some serious patience!

Then after meeting her new teacher because we have switched her out of her current class for reasons that will only improve in a new class-

she was excited, she was thrilled there are class pets, and they do art, and then

and then........ she and Ty were outside at the same time, playing

not together, but outside, in the front yard, he playing with his bow and arrow set

she jump roping!

And I swear, she really is an Angel on Earth- because for the amount of time she spent crying because Ty was being just straight up mean to her- hiding her snoopy, just honestly being a jerk (however, I get that he isn't really being a jerk, he clearly was struggling greatly to gain some sense of control over his world, which was evident by him trying to control Sarah, although she doesn't go with that and then he says very unkind things to the kindest sweetest, and most forgiving little girl he will ever know!

and to prove that, there she was, playing outside

invited by Ty

although not to play with him, just to be outside with him!

And that is a gem moment!

And boy did I need to see that.... that is the kind of moment that reminds me

he is just a little boy who is trying so so hard

even if, well, he makes things very difficult.

It's a lot of effort on his part, and I will remember that for tomorrow!

I just love my little Belle and my little guy..... and it warms my heart to see a good moment between them - it's been a while!

It's a start.....

What a week!

We start off this weekend with RAIN

my boy waking me up at 7:30am politely asking if we can make pancakes for daddy

and before we could eat them - he's back asleep!

This is the first morning he has taken a nap in well over a week!

Lately it's been an afternoon event

I swear just when you think you understand and he switches things up on you ;)

But another switch was how he woke up this morning

my dreaded saturday, which is tough because it's different then Monday thru Friday, everyone is home, daddy is home, everything is different

therefore behaviors, and everything being a struggle...... but today

Ty has decided to switch it up on us and well, things were definitely calmer for him

despite it being a saturday!

That is a good change up!

On Wednesday we increased the dose of his Memantine, he wasn't appearing to have any side effects and the low low dose just didn't seem to be doing anything- so psychiatrist said go ahead and double it to 7mg

(which is great because I' m no longer having to split a capsule!

That is not easy

It's been 4 days.... on a scale of 1 to 5... one being a really really hard day and 5 being a really really good day

day one was a 2, day 3 was a 3 and day four

I would say a 3.5.....

so moving in a good direction

maybe the med is working? It's always so hard to say

If we see a continued increase in good days, then maybe

just maybe?? the Memantine is having a positive effect!

I hope so, but we've also been down this road before... esp when meds are proven to be effective, but in my boy

it's different, esp the side effects.. he simply cannot tolerate so many

but when brain chemistry is OFF

no therapies in the world can help until you get that under control, that is the challenge!

But maybe it will be different this time, maybe even just a little bit??

again don't like to put my hopes on the line

as we try and continue to do the very best we can for him

and we'll never stop

but the past few weeks I'll admit

has been purely EXHAUSTING!!!

and stressful, and simply really really hard

and I can't even imagine what they must have been like for him

I"m sure about 1000 times worse for him

and as frustrating as it is for us, can you imagine how frustrating everything must have been for him

so, we the rain has come down

and now the sun is shining

we are starting off this weekend in a very nice way

don't know if it will continue, but at least it's a start!

sleep is beautiful..... it free's him of his obsessive thoughts

Well, he is asleep right now

after almost 2 hours, okay, 1 hour of really tough behaviors- OCD obsession with "buying" seeds "buying " a frisbee for Gretchen

and not having anything else but that focus and destroying anything in it's path of not getting it

so needless to say, house has stuff thrown EVERYWHERE

my purse contents thrown all around the living room, paint bottles thrown at me in the family room

well, to say my house looks a bit like war zone

yeah, it does

on a positive note

it ultimately ended,

he got "focused" on something more productive, healthier, and got off the OCD buying thoughts

and started playing with Lincoln Logs, building

then wandered into my room where I was finally getting dressed for the day

and although his thoughts started to come back as he lay on my bed

I could tell the boy was going to fall asleep

I didn't move, I didn't talk, I didn't do anything

I just sat there, and ultimately

he let go of his thoughts, he let go of ideas and he let his body slip into slumber

to regain energy, to organize, to relax, to be calm, to be free of thoughts, fears and worries

sleep is beautiful, isn't it!

And I'm tired now too!

This too will pass..........

trying to not be negative

but it is absolutely exhausting beyond exhausting when you have a child, who requires 100% plus of your attention due to severe anxiety and dysregulation and his ability to cope is in the hole and all he can do is bounce off the walls trying his hardest to "make himself feel better"

We are in the midst of a huge transition

changing meds, he's growing, the environment around him is in transition- Halloween festivities are on his mind, the days are getting shorter, the nights come much quicker- when he is used to playing outside till 7 or 8

It's now dark, there are more dark hours than light hours

and for a child who desperately fears the dark, well that creates for a very uncertain child who feels more anxious, more out of control and more fearful of his surroundings

and that sucks!

We started on a higher dose of Memantine today- as he doesn't seem to be having any side effects, and really having no effects- so we went up on the dose!

We'll have to wait and see... and I'm going to have to dig really really deep into my patience vault because he is on my last nerve these days

He is very difficult to be around because he's angry and constantly having outbursts

but yet seeks desperately to be with me or Brian because he is so insecure and out of touch with his own body

These are the things I know, and I know it too will end with time, he's changing, we're in a time of change, and well that is the hardest thing in the world for him to handle

He can't help it- if he could, he would!

This is my rational brain side... then there is the tired, exhausted, frustrated, not getting one quiet minute during the day

it's constant chaos, it's constant inability to focus and make good choices, his constant everything

and it's not his fault, it's not anyone's fault

This is just how life is at times-

but hell it is so hard sometimes!

It starts the minute his eyes pop open and ends only when his eyes finally close at the end of the super long day

and even that, he is NEEDING to sleep with Daddy again- which tells you how hard this time is for him

he was doing so well, sleeping in his own bed, with Gretchen and well, he just can't right now!

So I need to stay strong, he more than ever needs to rely on me being consistent with everything else is crumbling around him in his mind

I will do my best to stay calm and balance his inability to be calm and grounded

and I will as always just continue to love him, no matter how hard some days and moments are

and I do know, that this too will pass!

I"m just hoping sooner rather than later :)

challenging him beyond his abilities......

What an awesome golden moment I witnessed between Ty and Sarah last night

pure golden

in fact, it's been more than several weeks since I"ve seen THAT kind of interaction and engagement with him and well, one of his sisters

In fact, he INVITED Sarah to play lego's

told her she could be the princess

and this is the new rented set that came in the mail yesterday

This was so wonderful, and even after all the bologna Ty has given Sarah for over the past several weeks

really targeting on her and literally just upsetting her over and over again (again negative or positive attentions, doesn't matter most of the time to him)

so so frustrating and here Sarah is so happy to be asked by her brother to play with him

and well

it was a pure golden moment!

Can't say the same for this morning now, with Brian having to work today, when Saturday's are already really tough on him

today has proven to already be challenging him beyond his abilities today!

So, I'm having a second cup of espresso coffee

it may need to be something stronger later today- hahahah lol

but that's what this day is bringing

so that's what I will do to best support these overwhelming difficulties he is having

but it just sucks!

Tired and... well........

Feeling a bit tired today!

Luckily the new lego set arrived that is "RENTED"

this is the greatest thing ever for a kid like mine!

But in about 1 hour and 20 minutes (probably not quite that long)

over 400 pieces of lego builders set

constructed

and done!

That was fast!

He did start playing with it a bit which was nice to see

it had a catapault which is pretty cool!

But feeling tired, and as October is quickly running into November

I"m feeling a bit sad at the thought that

probably no pumpkin patch visits this year!

Our yearly fun expedition I just don't think we can manage

I don't think Brian or I have the energy, the stamina to tackl the pumpkin patch

sometimes things so simple

are still so so so so hard!

I'm even hoping to take girls out and then

seperately maybe take Ty

but not sure

just don't know if the price will be too high to his nervous system

Just not sure if he is in a place right now that he would be able to handle that simple outing...

just some days are harder than others to stomach this

and that just sucks.

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

Music to my ears

I can't believe what we just witnessed!

Ty and Sarah being so incredibly playful... Ty initiated of course, because, well that's how things are always

but he got playful with her, and out of nowhere

picked her up and carried her

which of course my mind can't help but think how awesome that proprioceptive input is- he's carrying a 50lb girl

and then he gave her piggy back rides, and they are laughing and giggling together as two beautiful carefree spirits

and then I just heard them yell to me, look we can still do it

remember when we did this.... and they are practicing dancing routines, with lifts and tricks, and twirls in the air

OMG OMG OMG... Brian and I just simply looked at each other,

because this was so out of the blue, this unbelievable positive mood, this playfulness like we haven't seen (in I have no idea how long)

and his engagement with his sister, which the look on her face is absolute priceless (she loves her big brother so much and just wants to be able to "participate" in fun things with him

and the giggles - oh the giggles!

Music to my ears... absolute music to my ears!

This is just the most unbelievable moment- those two have always had a very special bond

I think it's because Sarah truly has an absolute unconditional nonjudging love for her big brother

and when he allows her to participate with him

she glows with glee!

OMG OMG Omg.. how can it get better

He just asked her if she wants to play a board game!

A Board game - holy crap!

What is happening over here..

It's so uplifting to see- just something I have been needing with things going so bad soso bad lately!

But this is EXACTLY why we will NEVER GIVE UP

otherwise we would miss moments like this one tonight!

Absolutely amazing and precious!

Trending upward?

this is a good post- a good reminder of what T bone may be going through, and clearly we are always guessing.......

important to remember we still don't get him...

and I do believe he does not WANT to "cause the chaos and problems" .... that his behavior does...He does not enjoy it- HE struggles so much

. I like this guys post about it- the kids perspective...

because we know Ty is a loving caring boy who wants to do good on the inside- it's just so hard for him almost all the time... -

this morning is first morning he simply fell asleep without any ANY behavior first... that's a good thing!

I love that my hubby is always ready to help him .we make a good team, actually we make an AWESOME team... Ty loves daddy so much- and Brian is such a good role model for him- someday it will show more...

but for now, we'll just keep loving him and helping him......

last night after he threw something and hit Sarah.. she started to cry- and he ran away angry,

but came back a few minutes later on HIS OWN, saying sorry Sarah.....

it's in there.. it may be deep deep most of the time- but his true beautiful loving soul is in there-

and he doesn't want to hurt his sister ever- or us... because he does love us- He loves his family..... ! We love him! :)

hoping today is a trend upward kind of day!

Autism Discussion Page 6 hrs · Edited · Do you think I am having fun? From the child’s perspective! “Do you think I am having fun when I scream, fall to the floor and repeatedly slam my head?” “Do you think I am enjoying it when I meltdown in the middle of a classroom with the other kids staring at me?” “Do you think I am having fun when I cannot sit still, and am running around the room, bouncing off the walls, ignoring your assistance?” “Do you think I am having fun when I am staring into space with glassy eyes, and turning away to block you out because I am overwhelmed and shutting down?” “Do you think I am having fun when I repeatedly hit my face with my fists until all the frustration is gone?” “Do you think that I enjoy hitting, kicking, and biting you when I love you?” “When I hear people discussing my behavior, what is there that leads them to believe that I like to do this; that I find enjoyment in creating havoc, stress, and anxiety for myself and others? Do you think I would do this if I had better ways of dealing with the problem? When I am continually acting out to gain your attention, you say I am “seeking attention” (like I enjoy it) and then put me on extinction. Do you ever think about “why” do I need constant attention in the first place? Why am I acting inappropriately to obtain attention? Instead of ignoring me, try and listen and understand why I “have the need” to act this way. Seeking attention may be the obvious reason, but ask yourself (1) why do I need so much attention, and (2) why am I using this behavior to get it. Don’t just “ignore” me. It doesn’t teach me anything, but makes me feel isolated and unwanted. It does not deal with why I need the attention, or teach me better ways of getting it.” “When I act out because of the demands you place on me, you force me to comply so my acting out is not rewarded by allowing me to escape. You say I act out to “manipulate” you to avoid things I do not like. Have you asked yourself “why does he feel the need to escape or avoid?” “What is there about the demand that makes me want to run?” If most children willfully comply, why am I resisting so adamantly. Don’t you think if I had the tools and felt confident enough to do it successfully, that I would also “want” to do it? If my brain is overwhelmed how can I think and cope? “ “When I become overwhelmed in events with overpowering sounds, sights, and smells, why would you think that forcing me through it is somehow helping me? If my brain becomes overloaded with stimulation, how can I be expected to “handle it?” What is that teaching me, if my brain doesn’t allow me to learn during those moments? How can forcing me to be overwhelmed help me learn to “handle it?” “I wonder why you do not ask these questions. You call me a manipulator, lazy, disrespectful, oppositional, etc, like I somehow intentionally choose to act this way; assuming I know how to act differently. At your meeting, you sit at a table and discuss among yourselves how I must learn to act better, to not be spoiled, learn to respect others, and comply with your demands; like I am so how having “fun”, intentionally choosing to act this way. You do not look at what you might need to change, but try to force change on me. You scold, force, punish, and restrain me, like I purposely want to be this way. Are you that DUMB to not think that if I knew how to do it right, and I felt confident doing so, I wouldn’t have more “fun” being cooperative and receiving the positive attention and rewards like all the other children. Look at my face! Look at my actions! Look at my emotions! How do you assume that this is fun?” “Please let me tell you, if I felt good about myself, confident in what I am doing, and safe and accepted by you, I would not be acting this way. Either the demands of the situation are greater than I can handle, the way you are supporting (or not supporting) me is overwhelming me, or I do not feel “safe” in doing it. I do not mean to “piss you off!” I do not find joy is making you angry and lashing out at me in frustration. I am not having fun in watching everyone stare, scold, and ridicule me into submission. How do you think that timing me out, taking away privileges and restraining me helps me to feel safe, accepted, and competent in your presence?” “Please, when you look at me struggling, assume that I am feeling anxious, insecure, and most importantly “inadequate” at the moment. The stronger the opposition the more insecure and inadequate I am feeling. Then, ask yourself how can you (1) change the expectations and demands to better match my abilities, (2) how can you provide greater assistance to support me, and (3) teach me better skills for meeting these expectations. And most importantly, in the heat of a meltdown, think “how can I help him feel safe”, not “how can I control him.” And when it is over with, ask yourself how you can change the conditions next time to avoid setting me into “fight or flight”, rather than how can you punish my behavior into submission. You are the one placing me in these conditions; you are the one who has to learn to change! Yes, like for all children, I need realistic boundaries and consequences to learn to be successful; however, meet me where I can realistically succeed, be a supportive mentor, and please do not assume that I am having “fun” and “prefer” to act this way!” “Thanks you for listening to me. Please do it more often!” This series on Challenging Behaviors can be found in the green book "Autism Discussion Page on Anxiety, Behavior, School and Parenting Strategies."

Playing is good

He s playing tonight! He using his imagination! This is good

We don't need anything other than love and support

He's asleep! He's quiet! He's peaceful! He's sweet to look at!

Tough weekend for my little guy!

Not only was it "the weekend" which throws a wrench in the "routine"

but daddy had to work in the morning of Saturday

then mommy was gone most of the day once daddy arrived home because I was working at the theater for Megan's performance!

That is what we call a "double whammy!

But with some of us out of the house, that's one positive - it makes it less stimulating environment!

And the day certainly could have been worse!

In fact, when I checked my phone before the show started- I saw that home had called!

of course, I"m always quick to think- oh no!

So I called back and there was Ty's voice on the phone

and I have to say, there is something about his voice on the phone- he may be 10 years old chronological age

clearly developmentally he's NOT

and on the phone, he sounded so sweet, and so little and reminded me of when he was 4 or 5!

It did melt my heart- he's so cute talking on the phone (which by the way is a fairly new "experience")

He has started wanting to call mom or dad when one of us is out to tell us "something of great importance of course or to say what someone is being mean - his perception when he doesn't get something he wanted when he is in a more regulated state of mind"

It's cute and funny and of course I would never dare say that to him- that would flip him inside out!

But again, his sweet voice when he's talking on the phone, and you are on the receiving end - it's heart melting!

Anyway, we definitely threw some big holes in his already unstable mind set from this week and well, waking up this morning wasn't even a little bit comfortable- but he without incident now is back asleep!

NO fits, no tantrums, no meltdowns, just laid his head down on the dog bed, in front of the TV watching sports highlights, and quietly went into slumberland!

How great is that... just what his little body needed, and more importantly he didn't fight it!

It didn't overwhelm him, he just went with it rather than resisting it!

That's a good thing! A very good thing!

After Brian had the appt (since Ty wouldn't go) at psychiatrist, and she believes he has outgrown his current dosing regimen for the meds he's on, which makes perfect sense when we see behaviors, agitation , occurring when environmentally things are improved- we just know these things... so increasing the dose of one of his meds - which will hopefully help him with his mood, irritability which then sends him into meltdowns- and then we in one week will be trying a new med. It's a bit scary to think about "trying" a new med- but we are at that point.... he's just not functioning in our home environment, everything is difficult no matter what... it's time to "consider" something different! That will start next weekend... don't know what it will bring

But we have to try something....

We are committed to him, will never give up, and trying medications at home is priority rather then "placing him"

People can suggest that to us till the cows come home

That right now is not an option for us, and I love love love that my wonderful husband advocated on his behalf and in only a few words said "but he craves love, craves snuggles, that helps him- and needs that - he is our little boy, he needs us!" "somewhere else, there is nobody to love him the way we love him!"................

what does the future hold, who knows, he is only 10

and no matter what, we don't believe that would be a better situation

no matter how hard things are, and can be

we are in a funk, but we always know, it will improve

good moments come with bad moments and good moments will fill us up once again!

People just don't think we can sustain "our bubble"

but as hard as it may be, when you see him thrive, shine, grow, my goodness it fills us up with hope and confidence that we are providing what "our child needs"

Even if it's not typical, even if it's not easy, even if it's frowned upon by others because they simply "don't get it!"

None of that matters- we get it- Brian and I get it!

And why on earth would we not do everything in our power to help our son- we simply would, we simply are, we simply will continue!

Family looks different for everyone- this is what our family looks like

please don't judge!

Please support with a simply smile

we don't ever need criticism, we don't ever need harsh looks or words

we don't ever need anything other than love and support-

and on that I will end ..... it's been a whirlwind week, a whirlwind weekend, my head as you can tell is spinning with my own thoughts, emotions

and I'm going to take this time while he is asleep to gather myself, ground myself, to take on the rest of the day and what ever it presents to us!

what a long day it was......

I know it's been a few days since I last posted, and well

the last few days have been quite the hell over here!

Ty just has been so extremely difficult, so extremely dysregulated, so extremely everything!

Outburst after outburst after outburst

Brian had to come home yesterday after I had been already out of the house since 8:45 (due to his behaviors)

me escaping is the best

but just couldn't get him calm

Those days are hard, those days just make a parent feel so helpless!

He had a psychiatrist appt in the morning, which we don't tell him about until that morning, he has been seeing her since he was 5

and hasn't seen her since July

no big deal, just update, plus we had medication questions, and well it's just time for her and us to check in

and mind you we had to do virtual appt because we couldn't get him to go for about 2 years-

anyway- yeah you guessed it, he refused ... I of course offered the motivation aka reinforcer of getting french fries after the appt

quite appropriate, it's a highly sought item, and some thing to motivate him

and well - no.. that was not what HE WANTED

I had just sent him back into a major OCD compulsion of "buy me a toy"

and he's now spiraling and obsessed

and it really just means he's not handling the news of having to go see the psychiatrist (we don't call her a doctor, because well that sends him immediately into PTSD)

and yeah, behavior, aggression, verbal insult, throwing.. everything

everything occurred!

And after HOURS of this and me being outside the house, and I hadn't even been able to make my coffee

my dearest BFF friend in the entire world drove by my house just to "check in and make sure I wasn't locked out of my house because she knows my situation and says she does this regularly just to make sure I don't need something and how amazing is that- how awesome to have a friend that cares so much that she simply knows I very well may be locked out of my house at any given time and just drives by to check in on me

and yep, she found me walking around the neighborhood and yep she went and got me a coffee, and yep kindly got Ty and smoothie

and well, that was exactly what I needed in this moment of quite honestly depression and not anger, but so extremely frustrated at this situation

but of course nothing smoothed thing over for my little guy, it continued on for several more hours, and that's when I ultimately had to call Brian to come and help.. I didn't know what to do! When he's like this, it usually takes 2 of us to help him

Long long story short

Brian by 1 went back to work, Sarah came home from school, (again thanks to my dearest friend for picking her up)

Megan came home, Ty and Sarah actually played a bit together (making potions)

and well, the day continued on as usual

putting the earlier events to rest and in the past

Because well, that's just how it is in this crazy world of our life!

And I"m sure it will be a "to be continued" story as it always is

that's just the ups and downs of living with Autism (and OCD and ADHD, and PTSD, and medical problems, and mood disorder.... yeah- ups and downs is the one thing that we can count on!

Words-

love this from Autism Discussion page:

"The biggest mistake they we make is assuming that people on the spectrum with good verbal skills, have good ability to understand the "gist" of what is being communicated. When we do we interpret their misjudged behavior as intentional."

Words are words, but it might as well be silent if you can't COMMUNICATE ..... very misunderstood with my son... he is so verbal... and if you pay attention close enough (or you know him).. it's script from ESPN, from sports shows, from movies, from TV shows, from us his parents

and he gets very frustrated when he can't properly communicate his needs/ wants/ desires properly

leading to behaviors

and we've literally been told "he can't have Autism, he talks so well"

Pay attention people, pay attention!

and more importantly if you don't know anything about Autism, then really nothing should be said about my situation! Thank you very much!

My boy talks, he's smart, he's funny, he's caring, he's loving, he's an amazing athlete

but he struggles, he struggles some days to just exist

he struggles to communicate, he struggles to sit in a chair, he struggles to understand what is being asked of him

He struggles and well, he struggles more than the average child, and I will continue to fight stereotypes, fight to make life better for him, fight to help him be happy, fight for him and fight to get him the resources and tools he needs to succeed! I will fight for him- and I will continue to give him the words, language skills so that one day he may be able to fight for himself!

Today- ......... I will just breathe at this moment!

today- in one word

sucks!

It's been high

and it's been low

and then it's been lower!

The minute things seemed to have been turned around

boom

he's exploding again

his mood is all over the place

he has no idea what he wants,/p>

but is angry we don't know what he wants

so today- just sucks!

Quite honestly, I'm so tired of the explosions- I"m on the receiving end and he has no idea his own strength

I do, it HURTS!

So, feeling sad- feeling frustrated, feeling confused, feeling a lot of feelings!

ahhh I need a new day, a new sunrise, a new 24 hour period to get myself in check so that I can then better help him get in check

this is the vicious cycle of Autism meltdowns- Mood disorder, ADHD, PTSD

whatever the cause

the vicious cycle of uncontrollable behavior, uncontrollable emotions, uncontrollable everything

and as the parent- trying- desperately trying our damnedest to get a grip, get control, help everyone lost in the cycle to reach solid ground once again!

But it is really hard sometimes!

Just really hard..... and this cycle, happening these past few days, going on right now

is hard to get a grip on

and is taking hold of me!

Breathe- deep breathes,

I will just breathe at this moment! I will breathe

I will feel the depths of my soul touch solid ground

and then reach in and stop this cycle

This cycle is just a cycle

It will end

It will move on!

It will be forgotten.

Just breathe!