A Side of Autism: The #NightLightGate

Something we never had to deal with before is our kids being afraid of the dark.
Until about a month ago - I was crashing on the sofa and noticed a light was on coming from the kids room.

I walked in and saw A-Man was asleep, M-Girl was in the "big bed" with her dad and V-Man was in bed falling asleep.
So who turned on the light?!

I was assuming it was A-Man because he had done it in the past and usually it involved waking up his sister to play.  But she was sound asleep with her dad and A-Man was snoring - even with the light on!

I shut off the light and immediately heard a whiny groan from the V-Man.

A quick look at my cell phone confirmed every parent's worst nightmare - it wasn't even 4am.  It's going to be a long f*cking day.

So he immediately jumped out of bed and turned the light back on and crawled back in bed.  V-Man pulled his blanket up over his head and that was it.

I adjusted the settings to my phone so the auto time-out on my phone would last for 10 minutes and I laid down in A-Man's bed nearby and tapped my screen so V-Man had some light.

It worked, he settled down and after an hour of tapping my phone whenever he woke up whining - he finally crashed.

The next day I shared this thought that perhaps the V-Man was scared of the dark.
PIC thought I was kidding - until I snapped due to lack of sleep.

Here's his argument:

1. He falls asleep in the dark.
2. It's dark all night in their room as they have thick, dark curtains - so it couldn't be the sunlight bothering him. (In Finland it gets bright very early during the summer months!)
3. Perhaps he woke up from a nightmare.
4. He's never been scared of the dark before - so why start now?
5. He is falling back asleep not because of my cell phone lighting but because of my presence.

So I whipped out my phone and went on the Whisper app and asked if it was possible for an autistic child to suddenly have a fear of the dark out of nowhere and what to do about it.

Someone autistic wrote back within minutes stating she's also afraid of the dark, never was before and a nightlight and a stuffed toy (if the V-Man's into them) should do the trick.

I told the PIC that I was going to buy a nightlight.

*Cue - biggest petty argument ever.

His reasons for not getting a nightlight:

1. It's a waste of money if it doesn't work.
2. He doesn't need one because he's "not scared of the dark..."
3. I need to stop spending money on things not being used.
4. Then he'll be dependent on the nightlight and the other kids aren't.
5. It was probably just a one-off kind of night.

I stared at PIC for a moment and decided - F-it - I am getting one.
I did the reasonable thing and waited to see what would happen the next night - lo and behold - the exact same thing happened before 4am.

I was a bit better prepared and made sure to nap a couple hours before dog-walking - so this way, the early wake-up wouldn't hurt so much.

After my experiment (as short as it may have been) - I battled back my arguments for getting a nightlight:

1. V-Man uses melatonin to fall asleep.  I've tried it once and it's quite hard to fight sleep once you've taken it.
2. I'm the one waking up - sure I could let V-Man sleep with the light on but it's a waste of electricity and I don't want to risk the other kids waking up.  I'm nasty when I don't get enough sleep - as pathetic as that sounds.
3. It's not a waste of money if it works.
4. We can wean a kid off a nightlight.
5. He crawls back to his bed to sleep.
6. If he had a nightmare - wouldn't he whine or cry?  He's absolutely silent when he turns the lights on.
7. My presence has nothing to do with it because it's just the light.  I'm not in the room when he turns the light on and crawls back in bed.

I bought a little nightlight and waited.

Third night in a row and he woke up between 2-4am and I quietly shut off the light and plugged in the nightlight.  It was a rotating one - so I pointed it downwards so it emitted a soft light in the room without flooding the whole room with light - and poof.  V-Man quieted and fell asleep.

So my new routine is putting the nightlight when I get back from walking the dogs - and we haven't had any issues since.

Now that I've moved out, I'm sure the nightlight doesn't get used all the time - but if the V-Man needs it - there is one available.

Naturally, PIC won't agree I was actually right about something and is probably still in denial about having a kid being magically afraid of the dark (last discussion about this - his response was simply "you've got him needing light now"...*eye roll) - but the main point is that everyone gets their much needed sleep and V-Man feels safe.

BIMU

PS Overnight care confirmed he needed a nightlight well before we got one ourselves - for some reason that information just never got to us....so another point for me! ;)

Update 30.5.2017: Nobody has needed the nightlight in a few days! :D  So perhaps it was just a phase.

The Other Kids

It is so easy to get wrapped up in the lives of the special needs kiddos in our life that we often forget that the others need just as much attention usually.

This was confirmed for me when I was scrolling through the Whisper app and read a whisper about a young person who was frustrated her special needs sibling got more attention than her (she being neurotypical).

This is how our conversation went (including any typos):
And written with her permission anonymously!

Her whisper was:

"I have a brother with special needs and i hate him! Why?
Because when i was in 5th grade my parents found out, and i ceased to exist, i pretty much became a maid to my family.  I feel so worthless :( "

In which, I responded with:

"I'm so sorry.  I'm a mom of 3 kids, 2/3 have special needs and I try so hard to spend time with each kid."

Shortly after, I received a chat message from her and her profile showed that she was 15-17 years old.

"Your doing good then.   MY parents only focus on him and forget me and my other brother and that's where they went wrong! As long as you try that is what matters.  It's when you stop trying, that is when there will be problems!"

"Thank you. I try!"

"Well good luck and more importantly love a lot.  For kids that can go a long way.  I just wish my parents knew that and if I can help other parents than it's worth it.  Have fun!:) "

"Thank you so much for sharing your whisper."

"Your welcome.  And let's just say I needed to let it out and this was the place I could think of."

"I agree.  My oldest is nonverbal autistic and my second kid has visual learning/SLI."

"My brother is ADD, ADHA, has Bipolar disorder, some form of Autism and a few other disorders.  I can't remember so life at home can be quite difficult.  I love him but at the same time I resent the fact that my emotional needs are neglected because of him.  So I try my best to take care of my youngest brother's needs.  And it's not always easy."

"Of course not! Wow."

We exchanged some more small pleasantries and she gave me permission to post this in verbatim on this blog - in a way of sharing her story - in the hopes to assist other parents who my often get tied up in their kids' therapies, emotional roller coasters and different upbringings.

I know I'm not perfect and I know it's not easy raising a kid that can't speak, won't use the toilet and the list goes on...

But what I do try to do is spend time with each kid throughout the week and evenly on the weekends to ensure that they don't hate my guts when they're older.
I try my hardest to treat the V-Man as equally as the others - especially when it comes to teaching him patience, kindness, manners and basic common sense.

I hope this post helps other parents realize that while their kids (regardless of age) may act like everything is okay - perhaps a lesson in maturity that's too early for them - they still need you. Whether they act like it or not.

And dear "other kids in the family" - you are loved.  You are strong and you are brave.
You're amazing.

BIMU