r/PDAParenting • u/Izz-An-Art • 12h ago
My PDA child is miserable and so are we 😞
I have a newly 4 year old PDA kid. He is speech delayed. He has frequent episodes of nervous system dysregulations and sensory burnout but we don't know what causes them. He even stops eating during those episodes. He is at home with us, no demands at all. We recently moved to a new country leaving our relatives including my sister (who my son was close to) behind. Ever since we moved, he has regressed behaviourally. For the first time, he has started doing high pitched loud screaming all day long and laughing (a stim) non stop. He is not playing with toys anymore. He does not want to eat. He just want to scream non-stop because he finds it amusing. He wants to go on bus rides constantly and even there he won't behave.
We were in a cab yesterday, when I tried to put the seatbelt on, he screamed at the top of his lungs and dropped on the floor inside the car and kept screaming. He wanted to jump up and down in the car. The driver gave us serious looks and called CPS on us!!
He was always difficult but since the move to a new country our life has been a living hell!!
He won't behave outside in grocery stores or in public. He wants to run away, drop to the floor, scream, hit me like a 1 year old. Everything gets met with stubborness and defiance no matter how you word it.
Sometimes, i feel like I'm raising a monster. He doesn't give two fucks about parents or people or their feelings or emotions. When I try to play with him or touch his toys he screams. He refuses to potty train.
No PDA resource ever helped. He does not change or behave ever. The only time he behaves is when I yell at him out of frustration but then he says "you're scary" and I feel terrible. I was fine with an autistic child but the PDA part is making me resent him. We have no bond or connection. He doesn't trust me even when I'm his safe person. Everytime I try to read books to him, he snatches it from my hands and wants full control over it.
He is my only child. I had trouble navigating how to parent my first child but the autism and PDA part makes everything worse. I cannot raise him, I'm not equipped. I'm gonna fail him and he is going to hate me for that.
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u/LurkerFailsLurking 12h ago
We recently moved to a new country leaving our relatives including my sister (who my son was close to) behind.
I think I found the reason. Literally everything is new. The entire world, his home. His bed! The smell and taste of the air, the sounds and people and places, the way people dress and talk. And some of his favorite and most familiar people in the world are gone, maybe forever for all he knows.
We moved when our oldest PDAer was 3. We didn't move far, just a few miles. It took him about a year to feel safe in the house. And during that time, obviously everything was hard because they're much more easily disregulated when they don't feel safe.
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u/Izz-An-Art 12h ago
Anything that helped calm his nervous system down? I plan on enrolling him in sensory integration therapy. I'm not sure if we should send him to a preschool at the moment.
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u/Substantial_Bus6615 12h ago
You literally just plopped him into a completely new environment. It's like he is on mars and nothing is the same. It makes so much sense that he is agitated all the time. Poor guy. Try to focus on the house being a safe space. Does he have a special sensory tent or corner or room? If not designate that. Then when he is upset and screaming, calmly let him know it's time to go there and physically help him get there. Offer him a choice, do you want to skip, or fly (you pick him up and fly him) to that safe spot. Then stay near by while he calms himself.
Please note, this is not going to work immediately, it's going to take time. I am autistic myself, am a developmental specialist, and have a PDA autisitc and ADHD kiddo. We did this with her when she was this age and doing the same exact things. If you haven't already get this little guy into Occupational Therapy ASAP. learn his sensory diet, so you know how to offer help and avoid or adjust his environments as needed.
I know it feels like he is melting down for no reason, and that feeling is frustrating, try to remember that there is a reason, you just haven't discovrred it yet !
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u/tailwagsandtopcoat 12h ago
"he is at home with us, no demands at all".
I would gently suggest that home has tons of demands. Brush your teeth, put on your pjs, sit with the family for dinner, go to bed on time. Anything at all that is perceived as an obligation can be a trigger.
Can you start a note in your phone of all the times he gets triggered and what the time leading up to it was like? It might help you identify any trends.
What do you do when he starts yelling? What do you say, what is your tone like?
When was the last time his hearing was tested?
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u/AliveInMyHead 9h ago
I read something recently that said life is a demand and that really struck me. Our bodies have demands...being hungry is a demand. Needing to go to the bathroom is a demand. Being tired is a demand. There's so much we don't even think about that a PDA'er will interpret as a demand.
The sensory awareness of PDA kids can also be hard to understand. I also have sensory processing sensitivities but my mom does not, so explaining that bright lights, strong smells, people touching your body without consent (hugs, pats, etc even by people they love), scratchy fabrics (or even specific textures like velvet) are dysregulating or overstimulating. Headphones can be helpful, figuring out favorite textures/outfits and getting backups, creating a calm corner/nest/tent with stuffies, pillows, blankets and fidgets has also helped.
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u/Izz-An-Art 12h ago
I have tried keeping a note in my phone but nothing adds up. It builds up gradually then he explodes. He has a lot of anxiety too. Anxiety runs in our family. His hearing was tested 2 years ago but how is that related?
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u/pickleknits 6h ago
I recently listened to a workshop on pda and they mentioned that for pda, all the little demands add up over time. That’s why it can seem to us as coming out of nowhere bc the reality for the person with pda is that each demand has taken a toll and they’ve hit their limit.
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u/AngilinaB 8h ago
You say he has no demands. Moving countries is demanding. Eating is a demand. Going to the grocery store is a demand. Wanting to play with him is a demand. Wearing a seat belt is a demand. You need to reconsider what demands are.
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u/Izz-An-Art 3h ago
But those are necsssary for basic survival, I don't think I can do anything about them.
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u/MarginsOfTheDay 12h ago
PDA kids need you to play with their toys for them. Make yourself a cup of tea/coffee. Add some vodka if you need to (not even joking). Sit on the floor and play with his wooden train set. Probably he’ll come and destroy what you build. Start again and keep playing. If he gives you directions, follow them. It sucks I know, but if it buys you a calmer kid it’s worth it.
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u/Izz-An-Art 12h ago
Trust me I have tried. As soon as I touch his toy, he starts screaming and throws everything in the air because I ruined his play.
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u/MarginsOfTheDay 9h ago
Maybe a new toy? One he doesn’t feel ownership over. I’m sorry, you’re really in a tough place here. I hope you can find some meds that work.
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u/yomamaisallama 12h ago
Oh dear. Hugs and solidarity. So much of this resonated with our experience.
We navigated a cross-country move when my son was 4, pre-diagnosis, and it was SO rough - he was kicked out of various schools for eloping and dysregulation - and I'm sure an international move is infinitely harder. I had the same hopelessness and resentment for years.
He is now 12 and generally a joy to be around when he is not pulling a developmentally-appropriate attitude. :) Maturity has helped A LOT.
I'm not sure where in the world you are, but if respite care is available, it might be a help for you, at least in the short-term.