ASD PDA aggression, what am i missing

[Freddie2308]

Hi, Just looking for some advice.
DS is 6, diagnosed ASD with PDA, undiagnosed ADHD, undiagnosed Dyspraxic, working towards assessment. Born prematurely, lack of oxygen for 6 mins.
Had an EHCP at school, but struggled, we removed him from school to home ed at the start of the year (offered a specialist school but refused and decided to home ed due to the new bills coming into force and questions around EOTAS being lost, we don't think he can do any formal educations. But thats a whole other story, happy with our home ed choice) We are currently unschooling and wont ever do any sit down learning I should imagine.
I had read about how he would leave school, all would be well for a few weeks then once he realised he was safe there would be a difficult time for awhile as he released all emotions and his nervous system relaxed. So understanding it could be another 9 months until hopefully we come out the other side. We did go on holiday abroad 2 months ago, so that would have caused a bump in the timeline.

We have had OT assessment, Sensory Diet for when he was at school and an assessment where the lady deals with how the body works and the nervous system. He has had courses of OT and we are due to start another one soon. We have great advice on these reports, all about deep pressure, heavy muscle work, proprioception and vestibular etc. We have read alot, but it is alot to take in and remember all the time. Obviously OT at home is a demand, so we just play games and sneak it in, using a heavy smash ball to break up lego etc. I have him out and about where I can to use energy and sneak in deep pressure squeezes, carrying heavy things if i can get him to, he drinks through a straw etc. If i notice he is starting crash bang play I will step in to help him play safely as he is seeking input to feel safe. We dont put demands on him and generally use the correct language, but we do have a few boundaries where some things will have be a 'can't let you do that'. We also have some really lazy days where we don't go out at all

The issues I am having is the aggression, numerous times a day I am being kicked, punched, theres door slamming, banging up the stairs, pulling everything out, throwing toys at me. So he obviously isn't happy but I dont know which way to turn. I think about whether this will get better as he settles into home ed or whether it is going to get worse as he gets older, hormones kick in.
The reasons he lashes out arent for big things, it might be he can't find a toy within a few minutes or hes too hot, or he couldnt complete a level on a game, or his dads in from work and needs a shower, its always my fault, then I hear thats it im coming to kick you in the leg, im coming to punch you in the stomach. Its all getting a bit much at the moment and taking his toll.
We went out to an open space yesterday then sat and had an ice cream, came home played, watched a movie then an hour later hes punching me in the stomach 6 times, throwing a toy at me, kicking me in the leg, then I later went upstairs after giving him some calm and asked if he would like something for tea, then its shut up, i cant hear the television because of you being stupid, im going to come and kick you in the face (hes never heard this language off us, tv is monitored, correct age etc) I moved away and closed the baby gate to slow him down but couldn't catch it correctly, it was a horrible feeling trying to get away and someone coming for me. He is a lovely boy, very kind, caring, intelligent when he isnt like this.
This morning has been slow, hes played calmly, weve talked, i did some jobs around the house, we have played, looked at old videos, no demands. Then I gave him some gentle reminders we would be walking the dogs soon (in his buggy with a tablet, or bike or scooter) its up to him. I then brought his clothes down and asked if he would like me to put them on or if he would like to. I got screamed at, kicked in the leg, punched, a toy thrown at me and he then told me he was going to kick me in the f... ankle. Swearing is a first, he knew words from school, but has never used them. Then banged off upstairs, apparently he was looking for a toy and i had disturbed him, he never asks for help anyway. That wont be the last explosion or aggression for today. He had three hours in his room past bedtime the other night where he was thrashing around, jumping, throwing things saying his brain couldnt calm down. We were just trying to keep him safe, trying to wrap him up, squeeze him etc. Thankfully he doesnt do that too often. We were told animal walks would help in the report so the next night, 2 hours before bedtime we asked if he would like to walk the dog on a short walk. He said he would like to, but he started getting very active then ran off, we had to catch him up and explain it was time to go back, the next 15 minutes were hair pulling, kicking, punching while we carried him home. He was screaming at us aswell.
I have had him to numerous SEN classes, activities and he seems to be way more extreme in his sensory seeking, nervous system behaviour than all the other SEN children of all different ages. I have never seen another bouncing off the walls as much as him.

I have some questions if anyone could give any guidance, and sorry for this being so long if you get through it but im stuck. We are thinking of changing our dining room into an OT room, monkey bars, crash mats etc but would need to save up, not sure if that will even help.

Would more weekly OT make a real difference? Or should I be putting more money into the nervous system therapist. We cant afford to do it all.

At what point is the aggression too much, most SEN kids can be aggressive and might have a meltdown after school, but its 8 to 10 times a day here something will happen and I will get hurt. Its affecting me now. He has been aggressive since he was maybe 3 but hes older, more determined now and stronger.

Is there a point when no matter how much regulation you do, you won't be able to change the behaviour just help it. We are no demand and try as many things as we can to help, the heavy muscle work, deep pressure, but i know I will miss things, but the dysregulation and aggression that comes seems to be totally out of proportion to me forgetting and saying something in the wrong way. Teeth brushing is a huge demand, but we cant just not do it. How do i know even if i was meeting every single need that this would work and theres not something else going on? Obviously I cant be 100% so will never find this out.

Do I have hope that this will get easier once he has school trauma out of his system, it has been 5 months with a holiday in the middle. Will his nervous system settle and things will get easier with time? He has been worse since leaving school, he hated it there, didnt have his needs met and was punished but our world of where we can go seems to be shrinking every week, is this just him releasing all the trauma.

We are in the Cahms list but I cant really go anywhere for help about this as I am concerned he will be pushed back into school, for his best interests and me to get a break. School destroys him. So im a bit up against a wall here.
I wish I could just have someone with us for 3 days and let me know everything im doing wrong, missing or if im doing an ok job and he is just letting go of school or if theres is something else to be looked into.

Thanks if you got this far, atleast it feels better getting it written down all in one place.

Hi OP, my DD wasn't this extreme but she was pretty extreme by typical childhood standards.

Things that helped:
We had some online sessions with Jack from New Leaf NVR. I think NVR can be really helpful as it's about changing what the parents do, not the child.
She used to particularly go for me when triggered so as long as she was safe I'd quickly shut myself away (e.g. in the loo, the utility room the bathroom). I got quite good as grabbing my coffee/phone/keys as I went!
DH and I had a code word for a while and we'd just go out the front door for a bit.
I think this works because they get into a kind of doom loop and removing yourself breaks it.
Obviously this requires advance thought, spare sets of keys and significant child proofing.
I think making a crash pad put of the dining room sounds good? You could do it cheaply to begin with, with Amazon boxes and beanbags?
The charity Capa First Response may have some tips.
DD has got MUCH better with age but I think these behaviours tend to peak age 6-10 so hang in there as it sounds like you're doing the right things.

Oh and keep a diary, including food, drink, emotions (DD CANNOT handle excitement), temperature, humidity etc.

It is relatively early days in terms of being out of school. Things are likely to change over time.

More OT would help. Although I would make sure I sought out someone with the qualifications and experiences to look properly at the sensory side of things, and not just someone with basic skills in that area e.g. only with module 1.

I think more sensory input would work. If you are not sure about what kit will work well for DS and what won’t, you could check if you have a lending library locally. It won’t be big things like monkey bars, but it would enable you to try some things and only buy what works for DS. You could also look at charity grants.

Has DS had a home OT assessment? This is slightly different from an ordinary OT assessment. It can look at how to make the house safer and better meet his needs. For example, you can get stoppers so doors can’t be slammed.

I think this is the problem with EHE rather than pursuing support via the EHCP when DC need costly support. An EHCP can fund far more than the vast majority of parents can afford to fund themselves. That isn’t a criticism of what you or anyone else can afford.

Personally, I wouldn’t have made a decision to EHE based on what may or may not come into force at some point in the future. SEN reform changes are years away.

As for avoiding seeking help because you are worried DS will be forced back into school, an SAO isn’t issued just because you seek help. Concerns are more likely to be raised if you don’t seek the help DS needs.

My DS can be aggressive, not as extreme as yours.
he’s diagnosed ASD, ADHD and anxiety.

personally I would go for an ADHD diagnosis.
medication isn’t for everyone but it has changed my boys life which in return has changed our life.

the way the doctor described it to me was his ASD brain is constantly fighting his ADHD brain.
one side is telling him to do one thing, the other side is telling him to do several. All day everyday.

school wasn’t a nice place for him in reception, year 2 we finally got his EHCP which has also been a game changer.
school have done referrals for us;
school nurse
early help team
connect mental health
these have all play a big role in helping him.

I understand your concerns for not wanting him in school but as pp the funding your child can get can help massively.

Just want to reiterate that my child with ASD did not cope in reception. They are now going into a year 2. Year 1 was a game changer got his EHCP and he had a sensory timetable at school and lots of interventions. Still goes for me at home but has reduced dramatically. I could not do home schooling as I need a break.

You say the aggression is taking its toll, and that's where I'd start - not with your DS, but with you. Because if you don't, that toll may simply become too high. The level of aggression you're describing is incredibly hard to live with, and it isn't something that necessarily disappears with time. I've been there with my own DD, and it was horrific.
Two things made a real difference for us. The first was an NVR parenting course - Phineyj mentioned that as well. It helped me understand what was driving my DD's behaviour and gave me strategies for everyday situations, especially de-escalation. You mention that DS gets triggered by what seem like "minor" things, but I don't think they're minor at all. If he's overwhelmed by being too hot, or if losing a game completely exceeds his window of tolerance, then those experiences are huge for him in that moment. NVR taught me to acknowledge and validate those feelings without accepting aggression as the way to express them.
The second was an MBSR (Mindfulness-Based Stress Reduction) course. It helped calm my own nervous system. That, in turn, made it much easier to put the NVR principles into practice.
And finally, please look after yourself. Not as a luxury or something you'll get around to one day, but as part of caring for your DS. You can't pour from an empty cup! I really hope things become easier for you, it's such a difficult place to be.