ASD parent of 3 non verbal ASD kids

Page 1 of 1 [ 13 posts ] 

stratozyck
Tufted Titmouse
Tufted Titmouse

Joined: 28 Jun 2022
Age: 39
Gender: Male
Posts: 32
Location: US

29 Jun 2022, 9:19 pm

We have 4 but the 4th is 4 months old. We are assuming he will be nonverbal at this point.

The others are a 6F, 4M, and almost 2F.

In the first two, the pattern was similar. They actually said words at 9 months, but it was single words. With the 6F, she mostly said "fish!" because she loves fish and I have an aquarium. They would said single words for a few weeks but never say them again. The total words they have said is under 200 (my wife tracks it). But on a typical day, they only repeat single words they see on the Netflix shows they watch. Its rarely verbal communication.

The 2 yo has only said "cat" and "fish". She is a vastly different personality but we are strongly suspecting she is nonverbal ASD as well. She is a very caring person (I am biased, she is a daddy's girl and we spend a lot of time together).

Well, so let me tell you about the older two mostly. They both refuse to wear clothes. The 6F in particular has a strong desire to run out of the house and so does the 4M as well. We have chain locks on all doors, even most interior ones. They are both extremely destructive. The 4M obsessively rips paper and has ripped off large sections of the wallpaper. It started a while ago and he'd just take any piece of paper he could get and rip it to tiny pieces. We'd turn around and a whole room was covered in tiny bits of paper.

My 4 yo son also reverted on potty training (he did briefly do it right) and now poops on the floor wherever he stands. We've replaced most of our carpet with hardwood flooring for easy cleaning.

The older 6F is potty trained but she is insanely destructive so we cannot let her have access to the bathroom unsupervised. She stuffs everything she can find down the toilet and the one time we let her have access we had to replace the toilet.

They are hard to discipline. They don't respond well to our requests. They do change behaviors slowly. We homeschool because we do not think anyone else can be trusted to care for them. My daughter in particular just bolts out doors and runs whenever she gets a chance. It terrifies us because we fear she will be killed or abducted. We are well aware of the sexual abuse rates in nonverbal girls.

Our life is completely upended because of this. We rarely go out as a family. The older one requires one person on her at all times or she will run off. They both at least keep their clothes on when we go out but anytime we are at home they just take them off the second we put clothes on them.

Its difficult in unexpected ways. We have had to have repairmen over and such and we try to keep them locked away, but more often than not if they see a naked kid they leave.

One time, my son got outside naked and he was playing in our own backyard and someone called the police. We have had to call the police once to help find our naked daughter who ran off.

The worst part of it is that other parents act like if we just spanked our kids they'd shape up. They have no clue how damn difficult it is.

The 2F - the daddy's girl - is completely different personality wise. She is a helper and she seems to see how difficult the older two are and she has actually tried to help me clean up their poop multiple times.

I think that's key - there is ASD and nonverbal stuff, but personality also matters. My oldest daughter loves chaos and destruction. She literally has ripped the wall in her room apart and we will have to replace it with paneling at some point. My son has ripped almost all the wall paper off in his room. I think my 2F has the same ASD and nonverbal stuff, but she is just plain a really nice person. It makes me feel guilty because I definitely favor her.

Anyways, just wanted to introduce myself. We are living in at least a 60 min documentary. When the first one was nonverbal ASD we were like, "oh wow, what are the odds." Then now at 3, we realize that's just what we make.

I worry about their future a lot but I am heartened by that documentary "Its not about me." I believe in them in the long run, but holy crap what about the short run.



DanielW
Veteran
Veteran

User avatar

Joined: 17 Jan 2019
Age: 33
Gender: Male
Posts: 838
Location: PNW USA

29 Jun 2022, 9:53 pm

Welcome to WP! It sounds like you have your hands full at home for sure. I wouldn't worry too much about the nonverbal part at this stage. I have an auditory processing disorder (and ASD level 2). I didn't start speaking until around 6 years, mostly due to the fact that speech doesn't always sound the same. its insanely hard even now for me to separate speech from background noise.



stratozyck
Tufted Titmouse
Tufted Titmouse

Joined: 28 Jun 2022
Age: 39
Gender: Male
Posts: 32
Location: US

30 Jun 2022, 10:08 am

DanielW wrote:
Welcome to WP! It sounds like you have your hands full at home for sure. I wouldn't worry too much about the nonverbal part at this stage. I have an auditory processing disorder (and ASD level 2). I didn't start speaking until around 6 years, mostly due to the fact that speech doesn't always sound the same. its insanely hard even now for me to separate speech from background noise.


Thanks, I hope things improve. The difficult part is the sheer destructiveness and the desire to run away. Three years ago when my oldest started really destroying everything she could get her hands on, my wife confessed she thought about just letting her run away.

She was destroying everything glass she could find and almost everything we owned made of glass is gone now.



DanielW
Veteran
Veteran

User avatar

Joined: 17 Jan 2019
Age: 33
Gender: Male
Posts: 838
Location: PNW USA

30 Jun 2022, 10:22 am

That kind of behavior will get better. Especially once you can work out some form of meaningful communication. A lot of destructive behavior can come from frustration at not being able to communicate things like "I want this" or "this hurts". Some of it is just normal destructive behavior that most kids go through, though it can be amplified by ASD.

I still hate wearing clothes. Sensory issues I still have make certain fabrics and textures horrible against my skin, but I've
found workarounds.



Last edited by DanielW on 30 Jun 2022, 11:35 am, edited 1 time in total.

magz
Forum Moderator
Forum Moderator

User avatar

Joined: 1 Jun 2017
Age: 37
Gender: Female
Posts: 14,355
Location: Poland

30 Jun 2022, 11:19 am

Maybe it's a very standard question but - do you have some non-verbal means of communication your children are comfortable with?
When my older daughter turns nonverbal, I give her paper and pencil. She can draw an elaborate picture when she can't spit a single sentence. Your kids might have additional difficulties processing language but are there some ways of communication they find easy?
Children of one of WP members learned to read before they learned to talk. Every child is different - but meaningful communication always makes parenting a bit less frustrating, both ways.

My daughter is 10 now and only one brand of trousers and one brand of socks are soft enough for her. But that's enough to have a life ;)


_________________
Let's not confuse being normal with being mentally healthy.

<not moderating PPR stuff concerning East Europe>


Pteranomom
Deinonychus
Deinonychus

Joined: 21 Apr 2022
Age: 39
Gender: Female
Posts: 345

01 Jul 2022, 12:15 am

I strongly recommend the book Eikona Bridge, if you haven't read it already. Eikona Bridge: LIVE Communication with the Autistic Species https://a.co/d/d9Cv88r
The book details the ways an autistic father figured out to communicate with his non-verbal children. I thought it was very good and use some of his ideas with my own son. Hopefully it can help you, too.
Good luck.



DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Gender: Female
Posts: 13,382
Location: Northern California

01 Jul 2022, 1:29 am

I'm afraid your situation has so many more challenges than mine did that I can't really think of what to say, other than I hope you figure it all out, and I hope that reading random posts here and there can uncover helpful insights. The same protocols and priorities most likely apply, just to different degrees, and without the ability to solicit input from your child. I do wish you all the best. Some amazing talents are probably hidden in all 3, but uncovering them could take a some magic.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


timf
Veteran
Veteran

User avatar

Joined: 25 Oct 2013
Gender: Male
Posts: 907

01 Jul 2022, 6:01 am

Even though they are mostly non-verbal, I would suggest you immerse them in language (reading to them, music, movies, etc.) this is helpful for brain development.

It is not fashionable today to mention discipline. However, traditionally the external discipline parents apply to children helps them develop the internal discipline they will need in life.



magz
Forum Moderator
Forum Moderator

User avatar

Joined: 1 Jun 2017
Age: 37
Gender: Female
Posts: 14,355
Location: Poland

01 Jul 2022, 6:15 am

Depends on how the discipline is provided and enforced.
My daughter went from (with some problems) to (fully disabled) under a strict, old-fashioned teacher. Recovery from it took two years.
However, she's naturally rule-oriented so if the rules are realistic (i.e. accounting for her abilities and needs) and introduced in a way she understands, she keeps to them herself.

There's an element of discipline that, I think, really matters: clear rules and predictability. It makes life less stressful for everyone involved.
But it has to account for individual needs and preferences, or it becomes unlivable and results in cheating and/or mental health degradation.


_________________
Let's not confuse being normal with being mentally healthy.

<not moderating PPR stuff concerning East Europe>


kraftiekortie
Veteran
Veteran

User avatar

Joined: 4 Feb 2014
Gender: Male
Posts: 85,161
Location: Queens, NYC

01 Jul 2022, 6:29 am

Yep.

Certainly make use of alternative means of communication.

Do you have PECs or alternative communication devices? Many nonverbal people are cognitively capable of speech, but have difficulty in the motor planning required for speech (verbal apraxia).

Also, what Magz said. Drawing is a great way for kids to reveal their feelings when they are reluctant to express their feelings directly.

I can see how all this (especially the destructiveness) could be a really rough deal for you. I would have a really hard time with this, even though I understand autism fairly well.

Are they in some sort of program for autistic kids?



Jon81
Snowy Owl
Snowy Owl

Joined: 4 Jul 2018
Age: 41
Gender: Male
Posts: 165
Location: Sweden

14 Jul 2022, 1:05 pm

Hello stratozyk, you are not alone out there - even though we're not that many.

I have 3 kids now. 6M :heart: 4M :heart: 1month old girl :heart: :lol:

All non-verbal.

Oldest one was potty trained several months before NT kids. He was also very early with pointing out stuff in books and stuff like that. Could understand two languages (his mom has another mother tongue). Extremely social and cute. Smiles at everyone. Points out his own nose, my nose, eyes, ears by the age of 1. Then reversed into autism... 8O Middle kid seemed as NT as anyone. By the age of 1,5 it was pretty clear he's also on the spectrum. The new born girl was not supposed to be mine, my wife wanted a donor. I talked her into having one last try - so now I'm hoping I can deliver one baby that develops normally so my wife can feel good again. It will be a stressful year for sure.

They are diagnosed with autism level 2.

Oldest one was assessed and they say he's got a mental retardation. I call that BS. The kind of test they did was things he'd pull off at the age of 2. The woman doing the test did not impress me one bit. FOR EXAMPLE. He was supposed to sort tables and chairs. To begin with - why sort things that belong together? If you're given a picture of a bed and then a pillow, you'd think they belong together - right?? On top of that, my wife noticed the legs of both the chair and the table had these lion paws. These kind of details should not interfere, that's the point of an IQ test. And she also took her time. Can you believe she had to read the instructions during the test? This pissed my son off so much he just wouldn't do the test. Frustrating as HELL. And her reaction to his frustration was trying to make him wait... because that was part of the evaluation she said 8O Nice one.

I know, these people are completely useless. They think they're doing parenting sitting on their asses while the kids are playing around. They even think it's hard work. When I'm with my kids it's 100% parenting every minute of the hour - literally. Going by their standards they'd be worked out before breakfast at our home. The difference is astonishing. Their kids are out playing all day and parents are nowhere to be seen. I never see them running around chasing their kids. The hardest part seem to be having to call twice when it's dinner time.
To people like us leaving the room is completely out of the question. They will come up with something to drive you crazy no matter what you do. We've got a fence on our garden, which the oldest is now able to climb. Every door locked all the time. Kitchen need to be closed - and that's just the default setup. Then you go around picking up food they've been spitting out. Trying to stop them from filling up the toilet with toys/toilet paper and flush. You forget to close the kitchen fence and you will most likely find a package of eggs crashed on the floor. That happened about 20 times so far. I could go on forever. They also demand a lot of interaction. I don't really mind that at all - but when you've been in the trampoline for a good 2 hours and you know you should be taking care of normal stuff that people do in their home you get a little bit STRESSED. My wife and I need to go out in the middle of the night to take care of things from time to time. That's what other people don't understand. They're sleeping on the coach or out taking a walk - things we never get to do.

We've been doing this for 6 years now with constant stress that added 16kg fat on me + addiction to calming pills. Having ADHD and parenting is tough enough for most people.

It's quite amusing to see them have a go at our sons trying their special approach. Sweet talk and a serious explanation will do the trick :roll: Oh, and this also goes for autism "professionals". Sometimes I wonder if we're just a special case.

I can assure you, these parents wouldn't last a day. They'd be coming back crying if they had to take it on. What's even more annoying is that many people are worse than kids themselves. If you're not having a hard time with your kids you also need to deal with "adults". Ohhh he cannot go near the tractor. Oh he cannot sit there blablabla. They have a rule for pretty much everything. I'm f*****g glad my son is not growing up under those circumstances. They are more concerned about having a pillow tucked the right way in the sofa than their kids getting to play. I don't mind my kids playing in any room at all. I don't give a s**t if there are toys everywhere.

Especially during this Covid BS people have been extra crazy. I'm not a genius of any kind but one can really start to wonder what the hell is wrong with people and how stupid they can get. Going with an airplane... NO ONE TAKES THEIR MASK OFF, NOT EVEN FOR A MINUTE (unless you are eating something you bought from us). YOU MUST KEEP A DISTANCE OF 1,5 METERS - and on arrival the transfer bus will not move an inch before it's COMPLETELY STACKED with people. Once you get off the bus the rules start to apply again. These people are high functioning morons and you're stuck having to play life their way.

The one thing I've learned is to try to be as nice to people as I can. If they try to BS me I will burn them down.

How much of autism/adhd do you have in your family?


_________________
Din Aspie poäng: 102 av 200
Din neurotypiska (icke-autistiska) poäng: 108 av 200
Du verkar ha både Aspie och neurotypiska drag
Diagnosed with ADHD 2022


Jon81
Snowy Owl
Snowy Owl

Joined: 4 Jul 2018
Age: 41
Gender: Male
Posts: 165
Location: Sweden

14 Jul 2022, 1:12 pm

I forgot to mention we've also had to deal with the police.

My wife said I actually should be getting a medal after each day, and instead I get a call from the police. I had restrained my youngest son while putting on his seat belt. Before that I was trying to calm him with hugs, pictures, calm talk, kisses and words. It was a very gentle holding. He was upset because the amusement park was closing and couldn't control himself. I understand this anger and frustration because I was the same as a kid, hence my ADHD diagnosis.

I don't blame people for calling the police. They are doing the right thing. It could have been someone getting hurt or abducted. What makes me angry is that we need to get into these situations. It shows exactly how hard things are.


_________________
Din Aspie poäng: 102 av 200
Din neurotypiska (icke-autistiska) poäng: 108 av 200
Du verkar ha både Aspie och neurotypiska drag
Diagnosed with ADHD 2022


Ettina
Veteran
Veteran

User avatar

Joined: 13 Jan 2011
Age: 33
Gender: Female
Posts: 3,966

18 Jul 2022, 4:39 pm

Continuing with the recommendations about improving alternative modes of communication, I suggest you check out this guide to getting started with AAC.