2021-09-28 - 6:45 a.m.

Morning Vent:

I HATE when a document just * poof* disappears.

Of course it has to be somewhere....

Not possible for it to not be saved at all, right?

Well,,maybe it is possible.

That did happen last night as I wrapped up intense editing of a document.

JUST as well as right after I sent it internal - to have my cohort come back and say the document was an old version (not showing recent changes we all reviewed) I looked at what was sent (With the name I THOUGHT I save the file as... very carefully keeping track of versions) and indeed it was an old one;
and I commenced searching to see if there was any trace of the document I just spent about two hours further revising.

JUST THEN the opposing party came back with their feedback

SO just as well As cleaner to just re write all my edits on the version they sent back

They sent it back at something like 6pm

I was done for the day... had a board meeting actually..

AND This is the best part of the day (found it hilarious)

MY KID, comes to my office and just said something like : "I made food"

very brief, not detailed...
but then comes back and says a few minutes later ( which I found hilarious)

" YOU need to come eat; stop working or I am going to shut off the router as you are a workaholic and dinner is ready"

I just laughed!! and pointed out "hey it is only 6pm; not unreasonable and I do have deadlines today..."

but said ; " Hey thanks for cooking"
and I did take the tip , even though they were being overly dramatic in making the point.

And I went up to enjoy the meal with my teens.
Called it a day at work... and logged off. Can look for my recent edits today or just redo( faster the 2nd time around. I don't stress when these things happen and move on.It is just WEIRD.)

So for me I was happy to enjoy dinner with my kids for a time before tending to volunteer work.

So Funny that when one of them cooks they REALLY WANT the whole family to come to enjoy the meal together. Touché!

I think they perhaps "GET it" NOW and perhaps when I make a nice meal will be less inclined to be selfish with sharing their presence.

That felt like a win. ( Despite the threat of shut off router... but hey that is something I USED to to when they were younger. I don't bother anymore as they are of the age they need to figure out how to self regulate. One does OK, the other is getting better and it has taken longer but I think is in fact figuring that out.. Admittedly POTS causing more sleep than a typical person needs poses challenges with that. Yesterday my kid woke early- 6 AM or so , and I was up too The kid sent an email to the school as trying to work out scheduling issue; and then I was hoping we both could hop on a call to work on that concern but we didn't want to make a call so early .
My kid REALLY had to go back to sleep. SEVEN HOURS might be enough for some but it was a day where they just did not have any energy and even after breakfast felt awful still so went back to bed.

IT happens.

Basically my kid is feeling so much better as they know that they have to let their body get the sleep needed, when needed. Prioritizing that over the past year and they are feeling so much better. Not fighting insomnia and being up half the night biut then trying to function on sleep deprivation, my kid finally realized that if due to insomnia can't fall aleep til 3am then LET THE BODY REST UNTIL NATURALLY AWAKENS.

I supported my kid on putting EVERYTHING else as second priority to HEALTH.

I mean you have to be healthy first and foremost to FUNCTON and do anything else.

And it has worked.

So now is is great to see this kid feeling better, up and happy and pleasant to be around and interacting with siblings.

AND ready and feeling better that is willing to undergo the pain ( yes actual PAIN ) of conforming to social norms TO AN EXTENT.... but also strong enough emotionally as well to know to set REASONABLE HEALTHY BOUNDARIES around what willing to do and not do.

I am proud of my kid for setting clear healthy boundaries as a disabled person who knows their body's limits.

It is so amazing the ableism of the world. How some just DON"T GET SERIOUS CHRONIC DISABILITY

People can be remarkably dense in processing and learning new information that is not in their experience frankly.

Honeslty not everyone is that smart..

and it takes exceptional patience to navigate those folks not very bright that make assumptions which are just absolutely wrong.

SOMETIMES those that don't GET IT actually hold power

YES OFTEN they hold power over the lives of the disabled.

Some are very graceful in submission to bad decisions those in power make over their lives.

MY kid is not one of them.
My kid is a fighter and a self advocate.

SO I am proud of my kid and support that self advocacy.

My kid however is also temperate, actuallty had been VERY Temperate and patient in navigating the school of late ( although they don't seem to see that. SAD)
Perhaps too temperate and patient. They wanted to use advocacy- show up with a sign and publicly call attention to the fact

The local high school just REFUSED To give a schedule this year.

But decided to not show up every day with a sign or seek the support of others in the community and just try to patiently work with the school on commmuncating with the school and meeting with them to try to undersant what their concerns are with just enrollling my kid in their neighborhood high school they have attended the past years where there ARE NO Disicpinary issues; no concerns wth my kid as a student

BUT FOR A MEDICAL HOMEBOUND STATUS and
then failing the on line classes due to illness when could not engage in them.

I mean my kid passed two on line classed over the past years but then also failed two that they were not able to function and get up and even do the work for.

THIS WAS A KNOW MEDICAL ChRONic illness this kid has been battling that left them non functional for over a year. For a long time my kids could do NOTHING but sleep. I mean showers were too much energy. Eating a challenge ( many get feeding tubes and get hospitalized) I just prepared and brough food. But honestly my kid did no have ENERGY To even get out of bed.)
There was nothing to do but hydrate , eat and sleep and WAIT.

I mean seriously. WAIT IT OUT and hope in time the body heals and RESETS

So now much healing and that re-set happened

But the school is not enrolling my 2e kid who was on the Cyber Patriot HS Team and ROCKED IT when last in school;
who really had only been a victim of chronic medical illness so on homebound

and NOW WANTS To go back to school

But instead of giving a schedule when we emailed in the middle of the SUMMER to let the school know health improved

We were ignored until we emailed again . and then again escalating ... and contacted the School Board Rep and Superintendent.....etc...
and GLADD.... as
HONESTLY this is the fucked up part
and I wish were not an issue

BUT I can't help wonder if it IS an issue/

I MEAN for the past years the school was acting like they want my kid to finish high school. Last year I KNEW my kid could not function and I had given up. I said there was NO WAY They could navigate any classes. LAST YEAR the counselor encouraged saying "Why don't we maintain the enrollmeent and then try again in the Spring"

Back then I was not even hopeful that it was feasible. It made NO SENSE To keep my kid enrolled when the kid could not get out of bed. So I had a "Whatever" attitude of submission.

I mean I had already resigned to thinking high school graduation could be any time soon.

BUT That did not mean I didn't think it possible... eventually...somehow.

So Spring came and my kid was told by me to make a decision. Either COMMIT To trying and get butt out of bed and make effort and take the two classed on line or I have to tell the counselor no. Which is is?"

The kid said "OK I want to finish. I will try"

And engaged in actually 5% of the course work for those two on line classes

and was literally wiped out, exhausted. dependent and disappointed at how seemingly impossible this was and fell into a clear relapse of the body indicated NO I NEED TO KEEP RESTING AND HEALING

The body revolted.

This is a physical thing. I watched when the kid WANTED to be well and tried to WILL IT but it does not work that way.

There was not negative attitude then.

Just phycial illness.

Depression definitely has been improving thankfully! So the next period of healing and restorative sleep ensued and at some point my kid stared being AWAKE and functioning!

REALLY
This kid now manages own health care
Makes appointments
Keeps appointments

It was frustrating as agter searching for counselors for YEARS then when most ill my kid could not get out of bed and missed a couple therapy appointments The practice would not schedule the kid again as they were full and had no availability once my kid was ready to engage in therapy again. I have called around and it is darn HARD To find a decent therapist for my kids needs frankly. Most say NO not taking new patients.

THEN COVID hit and forget it... can't get into even the Dysautonomia specialist office we have gone to for years easily. ( I wanted the youngest screened and tried over and over again to get an appointment. they went all remote with a vulnerable clientele for a while just meeting needs of existing patients).

GOOD Luck finding a NEW Therapist

But my kid found one. and found a new primary physician.

AND had been taking care of their health- AS AN ADULT once age 18 and AWAKE and functioning!

Its been marvelous to watch so much growth in the past year.

I was very worried about this kid a couple years ago. Then I resigned to accept my kid for who they are.

If I have a disabled autistic bright child that stays home with me all my life SO BE IT

Honestly I have a brother with autism who is brilliant and he lives with my DAD. YES He had a few years off on his own ( likely just awful in some ways.... honestly likely the most tramatic experiences of his life were being forced to follow norms and live in a world that can be mean. I think the experiences of college and navigating work and tehn being COMPLTELY On his OWN without family when working and living in his own apartment are likely NOT the happiest or best years of his life to be frank. I mean that independence was had for him GREAT but independence is honestly NOT the end all be all for all kids and all people. I MEAN WHY is that preferable? Especially for someone who has social anxiety disorder and autism who finds other people EXECPT family to be uncomfortable and anxiety producing? I MEAN IF A PERSON WANTS TO VENTURE OUT GREAT but when they DONT want to? WHY??? WHY FORCE Them into some scripted societal norm? To serve whom? FOR SOME it certainly does not serve THEM Well. NOW if a person themselves WANTS to do that and THEY WANT to find a life where they contribute in community, in a job etc... and they feel HAPPY doing so- GREAT. NO ONE should limit a person and hold them back. But I also think no one should ONLY VALUE A person if they leave their home and venture off into the world. HOW FUCKED UP IS That to have kids and then not value them if for some reason they don't have ability to leave the home and enter the world? HOW FUCKED UP is our world if we don't inherently value PEOPLE for just being ! and if some families can't love their members because they are not who they HOPED They would be)

So enough of this morning rant.
My kid is not in school. The school did not schedule my kid after request to do so. My 2e autistic kid is home and seeking the next step to continue to try to get enrolled at the neighborhood high school;

I just think How ,messed up is is that a local high school would refuse to schedule a kid who HAS BEEN enrolled as a student JUST BECASE THEY FAILED The last year's attempt at taking on line classes;
(Bur frankly we have NEVER been given any reason for the refusal to schedule when requested . First they said AGE... but that is just legally wrong, makes no sense as my kid was 18 when first asked to get this year's schedule. My kid turned 19 in September. That makes no sense....)

and someone at the SCHOOL unenrolled the kid IN AUGUST of this year! I mean my kid was enrolled in July when we were emailing the counselor knowing the counselor was not back in the office and we wouldn't hear back until AUG. It was only AFTER asking to be scheduled for the classes needed to graduate that the account was shut off for this student.

I went into the ParentView system to check my other kid's grades in July as had been talking to that child about colleges. My other kid showed as a student still.

SO its messed up my child was dripped AFTER reached out and tried to get a schedule.

MAKES NO SENSE

To me this is the utmost abelism.

Anyway... Bellatrix up and ready for a walk so going to go outside and enjoy this lovely morning before digging into work today.

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