SPD - Help!!

[SensationalSusie]

Having an issue with DS.

After a VERY trying day I went down the google rabbit hole and suspect that in addition to ASD/ADHD DS probably had sensory processing disorder (SPD).

Going out is becoming a nightmare.

He has no fear of strangers, enjoys chatting incessantly, will not stand still, won’t listen to me, HUGS everyone, has no filter so says highly inappropriate things.

What the hell can I do. He is 6 so the point where it’s “cute” is going to be running out. He is tall so looks about 3 years older and I can already see people’s patience running out….

Please help, it feels like going out with an unexploded bomb.

I am constantly worried about him running off, touching people inappropriately, saying inappropriate things, breaking things etc.

No matter what way I try to explain to him he will not stop these behaviours.

Things already done

• referral for OT
• explaining, role playing

Things I may purchase straight away if they would help

• weighted blanket
• weighted jacket
• social stories book
• Beanbag

Things I may be able to get longer term (with garden modification - would have to remove two veg patches and enormous amount of shrubbery + save)

• trampoline
• swing

We are having to pay for some assessments privately hence holding off spending more money.

All of the above obviously for home, but I was thinking maybe it might have an effect beyond home?

After today, god I really need some help, he is getting too big and strong for me to manage it all on my own.

I don’t know how to regulate him when we are out to be calm(ish), and to bloody STOP with chatting to/seeking to hug strangers.

You are right in thinking if DS can regulate better at home, it will help outside the home too.

Could you get an indoor mini trampoline and swing? You could also look at a bodysok. There are cuddle balls too, but DSs didn’t get on with them.

Is DS receiving SALT support?

If DS runs off frequently placing himself in danger, you may have to think about reins or SN buggy/wheelchair.

Hi sounds like your summer holidays from school are going to be a challenge.
Is he in mainstream and if so any advice from SEN services or interventions? Sounds like he would need lots of movement breaks to aid concentration.

You are on the right pathway and thinking exploring his sensory needs. I’d see what they recommend before splashing out but trampolines and a swing may help.
An assessment/report may also help with your approach and thinking ( I am not judging or criticising) from “ will not stand still” to “unable to stay still “ for example.

Re dashing up to strangers you can work on this with a circles of proximity resource.
You may find one online or make your own. I’ll post e.g.if I can

You need circles of increasing size colour coded so in the centre is a photo of your child maybe on white / cream next might be green, yellow, red ( doesn’t have to be traffic light colours )

You then start with photos/ names of people and place on the appropriate colour. Immediate family would be green and you agree wording/ rules e.g. OK to hug, kiss Mum, siblings Grandparents etc depending on relationship

Next teacher, TA, doctor,friend etc ok to chat to no hugging kissing etc, might be yellow
Outer circle Red would be strangers might include people in shops, at bus stops etc NO touching hugging etc

When complete you can display at home
Once the idea is embedded you can remind him e.g. Remember circles? Red zone person
He may be able to place or sort people confidently when home and struggle to transfer the skill but this approach can be very effective.
May need to back up with definition of stranger etc.

Another idea is Think it don’t say it
Have a head outline with a thought bubble on paper another with a mouth and speech bubble
Write greetings statements and insults/ inappropriate remarks on cards ( could be real examples) e.g. Hello, nice to see you,
do you want to play?
Insults/ inappropriate remarks You smell (may be sensory) You are fat etc

Out and about you’d need to remind him
“ think it don’t say it” or use a symbol.
Good luck

Example below search circle of friends
Can be as basic or complicated as you like
according to understanding, reading ability etc. Use photos or names etc for those known to him.

Hi @Relaxinghammock thanks so much for your reply.

He’s not with SALT, he’s actually got a vocab/comprehension of language beyond his peers.

Loves chatting, seeks out stimulation constantly. The only time I can get any peace is when he sleeps or is watching tv which obviously we try and limit.

He is clumsy and struggles with fine and gross motor, has no fear of danger or comprehension of threat.

I’m not sure reins would work, though we are probably getting a harness for the car.

Definitely going to get the indoor swing and trampoline…. We are planning to get outdoor play equipment/big trampoline and adapt garden to make room and make it more secure but that will take time.

Indoor items I can get quickly and I think he is going to need them!!

@24Dogcuddler Hi, yes you are right he is totally dysregulated leading up to holidays and preparing for change… we have a visual calendar up to prepare him but needless to say he is frazzled already.

He is mainstreamed and I put him in holiday schemes (same one every time) as the routines are similar to school and there is a lot of physical activity which helps.

We got a lot of advice from private assessment and have been working on the strategies but needless to say it is nearly 2yrs since and the main issues presenting now are different so I probably need to regig what we are doing…

Also whenever we got through to NHS got some advice and a lot of presentations to look through, quite honestly I haven’t got through it all yet as had workshops school wanted us to go to and currently fighting to get him 1:1 in school… Main advice is going to come from OT but I’m thinking that will be some time.

I’m completely exhausted and burnt out. DH is working long hours to facilitate me being carer, but this then leaves me with very little support for myself. There is no extended family.

I realise he just isn’t capable of controlling a lot of his behaviour as NT would and I do understand how he feels. I was just at my wits end a bit last night and very tired, averaging about 4hrs sleep a night. He is getting about 10… but I have to spend so much time with him to get him to anything that anything else required for me/house goes on late into evening or starts early on.

Your recommendations are super thank you so much. I can see immediately that this will help him. I am autistic myself and suffered assault due to it as a child. I’m trying not to transfer my experiences to him, but I can see that while his affectionate nature and love of hugs/meeting people is endearing (now), it’s just so dangerous for him.

Really appreciate the detailed explanation and visuals really helped me.

You are very welcome. Thanks for your reply. Our youngest daughter was diagnosed with autism and SPD aged 3.
I’m a retired SEN Advisory teacher.
Have a look on Twinkl for visual resources some are free.

I’m sure your own insight and experiences are helpful. Really good that you are preparing him for the future.
You must be exhausted especially with no extended family and need time for yourself too.

There are some good sensory videos on YouTube
There’s Kelly Mahler’s info on Interoception and Brain Highways videos on vestibular and proprioception

SALT is about far more than the physical ability to speak e.g. it can help with social interaction and communication such as when you say DS has no filter and says inappropriate things. DC with ASD can benefit from SALT.

For an indoor trampoline, look at Bellicon. They are excellent, not cheap but last.

Is it an EHCP you are fighting for? Ongoing direct OT and SALT support can be part of an EHCP.

Cheers @24Dogcuddler I will check those videos out.

@Relaxinghammock We are not in an area where EHCP applies, it is the statementing process where we are. I’m not sure what will come through from the EA, we are having to pay private for Ed psych which even then is a years wait.

OT etc has come through via NHS, he was referred to equivalent of SALT even before ASD assessment and they said it wouldn’t be applicable for him… though that’s 3yrs ago now.

I will review all the info we’ve received and referrals made and check to see if they made one following intervention appointment. If they haven’t I may give them a bell to ask for review/further support in light of escalating issues.

Thank you both so much for helping, had made me feel less alone with this.

Statements of SEN can include ongoing OT and SALT too. SENAC have lots of advice and information on their website, including the statutory timescales for the statutory assessment, and they have a helpline.

@Relaxinghammock Thank you, we are just at the point of trying to get their attention… hoping to have more forward movement following submission of Ed psych report.

The NHS won’t offer SALT willingly as he’s verbal. If you want it included in a statement then you will need to push for it and provide evidence, such as ed psych report recommending it and saying it’s important for his development.

Thank you @openupmyeagereyes this is so helpful. I will try and do some reading around to prep myself for what is ahead.

Have ordered a lot of bits today… and he had a better day today, save for massive meltdown with shower before bed. 😴

OT and SALT assessments can be part of the statutory assessment.

Not sure if this will help with now but more so maybe some hope. I have an 8 year old with ASD who was similar when he was younger, constantly behaving inappropriate, even looking in people's handbags on the bus and stuff ! Wouldn't be still ever, I used to take him to groups at children's centre and he would not sit down the whole time. Things are not bad to that degree at all now.
It was actually when he picked up gaming he kind of chilled out a bit. If he hasn't got a focus he will still kind of be very nosey ect but not at all how bad it was and now you can actually tell him not to, whereas before it was like he was unaware, completely in his own world, no words went through.
I just have to try and keep him focused on something or he ends up getting bored and agitated, waiting for things is a nightmare so we will play games like I went to the shop and bought an apple ect. I know it feels and is exhausting to have to do stuff like that all the time I don't know wether anything like that would work for you but that's been my experience!

Thanks @Mumtoboys1 mine is almost at the stage of gaming, so maybe this will act as a relaxation tool. We already play games in queues so that does work!!

I think we are going to have to ask for SALT as he has no filter whatsoever and was very inappropriate at another event at wkend.

One thing that has helped is I resumed regular routine despite summer hols… no lie ins/tv in morning, straight up, washed and dressed a la term time. Which is a bummer for me of a wkend/hol… however strictly keeping it all same - bar the uniform - made life a lot easier today.

That's great that you've managed to keep to same routines and hopefully everything you're dealing with right now with phase out soon and/or you can get proper advice and help on how to manage and help him! All the best to you.