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!

Oh boy......

Once again- perfect timing of a good reminder: From Autism Discussion Page: "We need patience, consistency, and frequent repetitions to teach consistent routines."

" 1. Poor ability to check their impulses long enough to “think” about what to do. 2. Poor ability to “appraise” what is needed and how to do it. 3. Poor ability to monitor what they are doing, while they are doing it. 4. Poor ability to read the effects their behavior will have on others. 5. Poor ability to “think” about the consequences that will happen. These are all “executive functions” that occur in the prefrontal lobes of the brain, that are weak in all young children, especially those with Autism and ADHD.

Yep,.... all of this!

and yep, it is tiring!

I'm sure for all of us.... this is 24/7!

Needed this reminder