Wednesday, 25 January 2017

A Side of Autism: Future Grandkids

We have these great friends that come over weekly for dinner - a little less frequently now because of work schedules - but anyway, they give us adults the chance to act like adults (with kids) and we are able to chat away and the usual topic always involves what we did with the kids.

Naturally, it's hard to NOT talk about the kids when they're in the same room or bouncing off the sofa nearby!

A couple weeks ago, my friend C asked me,

"Do you ever think of the V-Man having kids?"

I was thankfully sitting down and whispered that I do think about it all the time.  (Not ALL the time - but every now and again!)
This somewhat surprised my friend and I explained:

As a mother of a special needs kid - with no way of knowing his future developments or skills, I constantly stress about what will happen when me and the PIC (partner in crime) are gone.

  • Who will take care of the V-Man?
  • Is it fair to assume or ask his siblings to step up to the plate?
    • Will they?
      • What about THEIR own family?
    • What about our younger siblings? 
      • It's not fair for me to ask my half sisters to help their nephew - they they may never meet (depending where we all live) and if they're still in the USA - then no.
        Nothing against the USA - but the medical bills are crazy expensive and the horror stories I hear about disabled people getting hurt by law enforcement that aren't properly trained to recognize (or refuse to) disabilities scares me.
  • Will we live in a country that cares about people with special needs?
    • Will he have a job?
    • Will he be able to afford a basic but comfortable lifestyle with assistance?
    • Will he be independent enough?
  • Will he ever fall in love?
(By this point - I'm in tears.  Like "Holy sh*t I can't stop crying and now - the f*cking snot is running out of my nose like there's a zombie apocalypse to escape from in my sinuses...)

I worry that V-Man will be left behind - alone, scared, unable to speak.
I worry that he'll never know what it's like to fall in love with someone.  I do not care if it's a man or a woman.
I worry that maybe he'll never find someone that truly loves him for WHO he is - AS he is.  When you "forget" he has autism and doesn't speak or act like the younger two - he's an amazing kid.  Of course, he's an awesome kid for having autism - but let's be honest, autism isn't exactly my favourite thing 24/7 - especially PRE-diagnosis...and when it comes to big things like doctor appointments or travelling/moving...
(I'm not saying I "HATE" autism - I don't.  I have a love/dislike relationship with it and when the going gets tough with him and us - especially when he was younger - it was more of an extremely dislike - borderline 'hate' session for the day.)

I worry this potential partner or spouse will abuse him - whether it's physical, emotional or straight up neglect.  He deserves the best - and I want him to be with someone that'll care about him as much as we do.

I'm curious (but I don't worry about this much) if he will ever be able to experience a safe, sexual relationship with someone.  
(Let's be realistic for a second here on why I'm saying that.  I'm not trying to come off as perverted in saying I think about my kids' future - way down the road when they're consenting adults - safe sex lives.  Most people in the world - get to experience that (hopefully positively and with proper consent and safely) - and I don't think that someone with special needs should be excluded from that list unless it was a danger to their health or someone else.  And if the original question is about him having kids - there's one main typical way to make/have them...So....time to get the elephant out of the room!)

I'm realistic in thinking that I will most likely NOT have any grandchildren to help raise from the V-Man.  Maybe all 3 kids will torture us and not have any kids at all.  (Which would really suck because PIC and I already have plans on spoiling the grand kids to pay them back for their trouble-making ways as they grow up! :P )

But I would absolutely love and cherish any of the V-Man's pets if he has one and is responsible enough to take care of one.
A grand-fish baby or a grand-puppy/kitty - I'm so there.
I don't do worms - nasty phobia - sorry.  But anything else is alright.

I worry all the time about the V-Man the most because he's the most vulnerable and yet, the strongest of my three.
Mentally, he must be exhausted trying to find some control in his physical movements and speech attempts - never mind trying to understand us and figure out how to do something as simple as playing.
(His current definition of playing with M-Girl is shutting her in the bathroom and sometimes in the dark if he's feeling giddy.)

As a parent, it's extremely frustrating to know that I have no way of predicting the V-Man's future.

With a neuro-typical kid - you can guide them and help them out with making choices about clothes, friends to hang out with (or avoid), colleges to apply to and so on.
You know that unless there's extreme circumstances - your kid most likely won't relapse and suddenly become mute or unable to use a toilet or unable to communicate at all.

I worry about ALL of these things and more - and he's only 1/3 kids!
But I'm just trying to teach him to be the best he can be, pushing his limits occasionally and to be a nice person.
I know if I worry constantly (what parent doesn't?!) - I'll miss seeing him grow up.

I'll try and make a video about this - but most likely I'll be a snotty tear-soaked mess mid-way.
But these - are some of the very sad and terrifying realities of worries that a special needs parent go through on an everyday basis...

And it could always be worse given different situations.

Thanks for reading and thanks to C for asking me the bold question.

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