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Here are some suggested organisations that offer expert advice on special needs.

What “support” has helped your ASD / pda children
21

Ilovechoc12 · 22/04/2022 05:35

Hi,

Just wondered what support has helped your ASD / pda child?

The older (8 yo) he gets the worse he is getting….. (not sure if that’s related to more intense feelings of wanting to game 24/7) but he’s getting more head strong. Fine as a toddler as you can pick them up but now that’s impossible as too heavy to lift etc.

We have a low demand lifestyle however now he’s slightly killing us as a family ….. so now we split up so one adult at home with him / partner goes out with other children to the park etc

I’ve got a million pda books so we use correct language as such / give options ….

we have had b sitters but then doesn’t want to stay with them - so can’t really see the point of doing respite care. We haven’t had any assessment for social care etc. Nothing is expected of him …. No clubs / no outings. We can’t even arrange to meet up with any friends (so that’s depressing) as I’m not sure he will leave the house! Even with picture social story stuff “ no it’s boring” just wants to be at home 24/7

There has been no school due to Easter for weeks so he should be relaxed.

Hes not been asked to do anything- but he can’t communicate (even though he can talk fully) so can’t articulate feelings / ask to do something is out of the question and generally really starting to annoy the other siblings ….. as they are feeling the pain. Which isn’t fair on them. They shouldn’t be “trapped or limited” by their brother ….. as sometimes in holidays I’m house bound as he won’t go out!

Wont listen - if you stay stop annoying your sister / brother - that can kick it off. Or even tries to dominate so they can’t talk just by saying “stop talking” “stop talking”

He doesn’t like to go out - anxiety - so we do very minimal stuff.

The only thing he loves is gaming.

However last night he’s crying / sobbing saying “everything in life is hard” - but can’t express anything else than that. So he must want some support? But I’m not clued up on how to help him?

Anything worked for your son / daughter? What support has helped your child?
Any professionals that have helped? Recommendations please ….

(He does have an EHCP with a lovely Ta but he prefers home than school 🤪)

We are in desperate measures as a family 😬

please pm if you prefer.

Thank you for any wise wisdom ideas / support that has helped your child / any suggestions. Really appreciate it and thank you x

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AReallyUsefulEngine · 22/04/2022 13:01

Sounds like, you need an early review of the EHCP, and potentially a change of placement. Or if there isn’t a suitable placement look at EOTAS. I know some DC with PDA with a completely child led EOTAS package with no demands.

Lots of DC with PDA who like gaming enjoy MindJam and they find that helps. Therapist (OT, SALT, MH therapies) that are experienced with PDA are often helpful too.

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AReallyUsefulEngine · 22/04/2022 13:03

Do you have a young carers group locally for your other DC?

Securing respite and then building up the hours would help. It won’t be a quick fix but even if they are in the house when you are there to begin with it is a step forward.

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Ilovechoc12 · 22/04/2022 14:00

Thank you for your reply!

I got the email that I’m at the top of the list of mind jam 👍 2 days ago so I said I’d sign up so waiting on times / dates …. Just literally this pm so waiting for Dan reply.

Im not sure I could cope with EOTAS that’s my worry! 24/7 365 days a yr 🤪 with 4 children under 10. I could cope with 4 kids (which was the plan) but one child with pda it completely tips the balance ….. he needs just 1 on 1 …. Didn’t really understand it all ….

no the other children aren’t young carer - would it benefit them ? How would it help ? but they are now feeling the pain of the pda child they are noticing the differences .. my kids have always absolutely hated any form of child care / school camps etc ….. not sure why. Suppose it’s because I don’t work so I’m the easier option without any rules and just hang out with me on a relaxed day and then they can decide what they want to do ….

I looked at a special school which the EP specifically recommended- I was absolutely horrified how she thought it would fit! It really wasn’t …. Can’t believe how wrong she got it. It wasn’t fit for purpose for my child - really violent behaviour - he’s a gentle / really anxious guy just struggles with life … I think he’s locked into a body he can’t get out of …..

I suppose - no school is perfect - No where will suit him …. So trying to make him a bit happy for the sake of the entire family as a package…..

thank you x

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AReallyUsefulEngine · 22/04/2022 16:02

As well as Mindjam, have you looked at Spectrum Gaming and Gecko? 

Each area is slightly different in what they provide but it’s worth contacting Young Carers, they provide support, trips out, grants etc. There’s also Sibs too.

With EOTAS the LA cannot compel you to organise or facilitate it, even if that means they have to fund someone else to, it also doesn’t have to be at home if you could work up to that. 

Are the any other SS within travelling distance that would be suitable?

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RaisingAgent · 23/04/2022 20:22

Hello @Ilovechoc12 , very interested to read your thread as my 4.5yo is PDA.

I absolutely understand the statement about family life being in crisis. It's really, really hard. My older child has ASC too (non-PDA) but even in the most difficult periods for him it doesn't come close to the exhausting and unrelenting experience we are having of parenting DD.

(I feel horrible to have typed that about DD, I love her SO much, but things are really really hard.)

I understand your fear of EOTAS ie you never getting any break. It's a real concern.

I have just been fighting tooth and nail to get my DD a decent EHCP in place for when she starts school in Sep, because I am so keen to make school work for her - I feel I cannot cope with mornings and evenings as it is, let alone EOTAS at home.

Have you come across Clare Truman and her work? I heard a podcast she did about a non-school alternative project she set up for pDA kids who are out of school, and although that has closed she now has a service whereby she posts out bespoke home learning packages each week to students she supports. She also does parent consultations via video call. I wonder if she could advise you?

I also have contact details if you want them for s superb clinical psychologist who is v experienced with PDA kids, working with her helped us a lot. PM me if you want contact details.

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RaisingAgent · 23/04/2022 20:26

Oh, and we are in a v similar boat with respite, DD anxiety means she cannot tolerate anyone else but us and I feel we simply must get this issue sorted, so we can go the distance, but no idea how ... we tried support worker from a special needs agency but it raised DD's anxiety to destructive levels and we had to stop.

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AReallyUsefulEngine · 23/04/2022 22:11

DD anxiety means she cannot tolerate anyone else but us

Raisingagent This is how DS1 started, but we were in crisis and there wasn’t any other option.

I understand your fear of EOTAS ie you never getting any break. It's a real concern.

If you do go down the EOTAS route this doesn’t have to be the case. It is possible to get a TA/LSA/PA/mentor funded to facilitate the whole package. DS1 has EOTAS and we have built up so some of the provision is out of the house with people other than us. He is funded 2:1 out of the house. EOTAS isn’t perfect and if there was a suitable school DS1 would be going, but EOTAS is the only option at the moment for us.

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NinaManiana · 23/04/2022 22:34

Interested in this post. So many things resonate with us.

In terms of specialist schools - we looked at loads. I don’t know where you live but there are lots tucked around. For example schools which are set up for dyslexic kids often also (don’t advertise it but) take ASD kids with PDA as the teaching methods are similar. We had a similar experience where the first special school we looked at horrified my son’s father with kids all shrieking and smashing stuff up and he refused to look at any others. I persisted and found a perfect one in the end.

As for young carers, the support can just help siblings to understand why one member of the household has different rules and stuff. Early intervention should prevent them from getting resentful later on. I’ve enrolled my 4 year old even though he’s not a carer for his big brother. But he does need to understand why his brother sometimes is horrible to him.

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RaisingAgent · 23/04/2022 23:22

ReallyUseful - This is how DS1 started, but we were in crisis and there wasn’t any other option.

Did DS1 get used to the respite despite it being difficult to start with? I'm sorry to hear you were in crisis.

I didn't know EOTAS could be delivered by someone else, was that a huge tribunal battle to secure or is it a fairly standard thing with EOTAS? That's great DS1 can be out of home for some of the time.

@NinaManiana That's so interesting to hear that some independent SS will be suitable for a PDA child - is that true only if the PDA child turns their struggle inwardly onto themselves (ie "fine" or "quiet" on the outside) or would a dyslexia school also take a PDA child whose struggle is expressed more outwardly and visibly?

(Sorry for clunky description, I'm trying to differentiate between how a child's behaviour is experienced by other students/staff, without minimising the difficulties a child may be experiencing inwardly.)

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NinaManiana · 23/04/2022 23:30

My research has been that there are schools in all shapes and sizes, they’re just really well hidden. I looked at the good schools guide and filtered on SEN and spoke to the national autistic society and spoke with therapists and SENCOS and others to get tips. We ended up going for a school which specialises in communication difficulties. But were very keen on a school for dyslexia that we may still re-consider in future.

I have found it really helpful getting networked with other local parents of SEN kids because i’ve seen there are so many different profiles of kids, some verbal some not, some explosive, some implosive. Some mathematical, some social, etc etc, and there are education solutions for all of them.

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AReallyUsefulEngine · 23/04/2022 23:33

DS1 still finds respite difficult and we are on the fifth provider after incidents but things are better than they were, and he and we benefit from it. It wasn’t beneficial for DS1 or any of us for DS1 to be so reliant on me. We noticed just how much we rely on it during pandemic and DS1 took several steps backwards.

Not everyone has someone facilitating the EOTAS package, but it is possible. Some have a few hours right up to others having full time TA on top of tutors/therapists. You cannot be compelled to organise/facilitate etc. it, so if the LA have to fund someone else to they have to. 

Some have to go to tribunal, others don’t. For us, we have a HLTA to cover the time out of the house to provide the escort for travelling and the second adult for the other professionals but haven’t pushed it to get hours to cover the provision at home as one of us would mostly be at home anyway so we didn’t feel we needed to push for another adult on top of e.g. the tutors and therapist for  that time. We didn’t need to appeal.

A dyslexia school is unlikely to take any child that displays challenging behaviour.

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Ilovechoc12 · 25/04/2022 04:43

Thank you for everyone’s replies it means a lot! plus all the recommendations / advice it’s so helpful! I didn’t know about a lot of things mentioned so thank you all x

Please the clinical phys recommendation would be fab 👍 that’s the only type of person he hasn’t seen! We have paid out literally thousands for other “professions” and still haven’t really got any more help / more ideas going forward. We actually had Clare Truman in our house to watch him for 3 hrs she said we were doing all the right things / saying all the right things but unfortunately she says he’s the most text book pda boy she had seen!

I managed to drop my phone in the bath so I’ve been lucky and it’s dried out now even though it’s suppose to be waterproof it’s died charging up - so will write a more detailed reply tomorrow…. So sorry for going silent. At least it all working now 🤩

The only issue is these SS it’s so hard to actually gain access to visit these schools! Like literally waiting months for an apt - good idea about good schools and nas

We are in Surrey (only because of the trains to London) and there are a few SS around but minimum distance is 35 mins away and I honestly can’t even imagine him getting into a taxi EVER - he’s probably refuse the house. Or I’ll just have to drive him there and back.

Suppose the issues we are facing living with PDA

  1. general life
  2. w/e life (as difficult to go out)
  3. holidays - this is basically what I live / dream for and now I doubt I’ll ever take him on a plane again after the last time - so what I’m I supposed to do with him / stop all holidays from now on. I love hot weather / swimming in the sea / sunshine and uk doesn’t cut a holiday for me ….. but not sure what the answer is
  4. school - yes I need to put more energy into this - some good advice has been given or maybe I need to go down EOTAS route ….. but trying to find a good PA might be like gold dust - don’t imagine them to be many people around who want that kind of job ?!?!?
  5. other siblings which aren’t find it fair. This is starting to upset me now and especially the oldest is trying so hard and he’s feeling the pain

Not really sure what the answer is …. But living with kids with pda is so bloody hard! So sorry everyone has experienced similar times …..

Suppose we are in crisis mode for the family. Not sure really what to do…. My thoughts were
  1. split the family up to share the kids 3 one house and pda in another
  2. pay someone just to stay at home to look after him not sure what will be possible as he will just follow me out of the house (but then the problems are who wants to work with pda child / be house bound) but he can not ruin any more stuff as a family …..
  3. or even residential care is now in my thoughts which sounds horrific and I’d of never even wanted this but he is damaging 5 peoples life’s while we all bend over backwards and more to try and keep the peace for his sake. Even though it’s not supposed to work for pda kids

Everyone has given lots of food for thought and I will try and work out some more answers maybe ……

Yes we defo need respite in our house now - so prob set up an assessment- hopefully that’s a quick process who know 🤪🤪🤪

Also, I’m not still not convinced gaming regulates Asc kids just seems to be like a drug to me - the more he does it the more he wants it and he can literally play all day every hr and doesn’t care about food / drink.

Today is a new day onwards and upwards 🤞

If anyone has a personal recommendation for a school please let me know or pm. Or any other recommendations.

yes I do need to find some young carer groups for my children ….. hopefully they might appreciate it.

sorry for the jumbled essay - I’ll write better tom.

thank you xxxx


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Ilovechoc12 · 25/04/2022 05:32

And I do really love him but it’s a really really evil condition to have. He hates it and it’s killing him for life and everyone else’s around him …. So hopefully I didn’t think I was trying to palm him off …. But I think it’s coming to a point where I can’t do much more - I have bent over backwards and more to try and accommodate him but it’s just not working …. I have 3 other kids to look after too. Think my husband is close to cracking up too - so hopefully things will improve 🤞🤞🤞🤞

Suppose he is lacking the ability to work out coping strategies and just to enjoy life. he’s too anxious and not interested in life.

Some parents would have no idea - they would be absolutely horrified / totally shocked if they saw this life - that’s why now I distance myself from everyone - it’s beyond crazy unless you have experienced it.

thank you all - it means a lot being able to write it down with people who actually get it x

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AReallyUsefulEngine · 25/04/2022 20:56

minimum distance is 35 mins away and I honestly can’t even imagine him getting into a taxi EVER

Many parents think this, including parents with DC with PDA, but once they have settled in DC often cope better than parents imagine. DS1 was thrown in at the deep end, he travelled over an hour to a CAMHS unit. I thought there was no way he would cope, but he did. We loaded his ipad with Lego movie, special interest documentaries etc. and sent him with that and a little box of Lego.

For PAs, for DS3 (has less complex needs than DS1 and your DS) we have a university student, we have had other university students previously too - medical, nursing, OT, physio, teaching students. For DS1 we have ex foster carers (ex because they adopted and their DC are now teens). Others have had success with asking special schools to see if TAs want extra hours.

he’s too anxious and not interested in life.

This was DS1 several years ago now. His mental health prevented him from engaging in any aspect of life. Things can improve.

You can search for schools here. Depending on where you are in Surrey have you looked at NAS’s schools? Also, if it’s in travelling distance parents seem to be happy with Queensmeed in Windsor. Some seem to like Heath Farm in Kent and Philpots Manor in W. Sussex too, but some don’t. All these have admitted pupils with a demand avoidance profile previously. St Edwards in Hampshire is a SEMH school and 9+ but I know it admits some with demand avoidance traits. I’m sure there’s other schools too that may be an option.

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RaisingAgent · 26/04/2022 17:33

@Ilovechoc12 Wow I can't believe you had Clare Truman in your house! I'm a bit starstruck with her because I cried when I heard her interviewed on a podcast, I had never heard anyone describe before the dynamic I see in my own child.

But it's no good me waxing lyrical about that, I'm so sorry to hear she had nothing new to suggest for your DS.

I really understand the avoiding other parents who would simply have no clue what's happening. My DD tries furiously hard to mask in public so it's often like Jekyl and Hyde when she gets through the door. Having said that, today she lost control on the street half a block from our home, and DH came out to find us because her distress was so audible. I felt so utterly miserable for us all, as I knew neighbours looking on would likely think I was just a spineless useless parent because I was staying gentle with DD, it must have looked to others like I was letting DD trample all over me and just needed to give her a stern hand. But you and I know different, right?! A stern hand leads to unimaginable pressure and the outworking of that is absolutely unmanageable.

The other day I was trying to explain how DD is to someone I hadn't spoken to for a long time. She listened really carefully and then said that my DD reminded her of her niece who was adopted into their family and had a horrendous amount of trauma and attachment difficulties to deal with, as well as autism. My friend described her niece as thrashing around quite violently for several years, trying to find her place in the world and where she belonged. That phrase really stuck in my ears because my DD does indeed, literally, thrash around, and so much of it is her being overwhelmed by her experience of being in this world. But it gave me real hope, because it showed that DD's thrashing is not in vain and will lead her somewhere ie it's not just a futile waste of pain (hers and ours) but that something may be discovered or shaped through it.

@AReallyUsefulEngine that's very encouraging to hear that other children who you might never imagine could cope with a journey, learn how to.

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Phineyj · 27/04/2022 18:59

Aw, RaisingAgent, that's so hopeful and poetic!

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Ilovechoc12 · 17/05/2022 05:04

Hiya,

thank you everyone for your advise - can’t link the names sorry!

So still plodding along (hopefully)

we spoke to the clinical phys which was recommended today and we will prob take her on just to gain our mental energy - she was very understanding… everything just takes so much time suppose everyone is super busy. She will send over her contract - She was surprised we don’t have any help but who exactly could we ask 🤪🤪🤪

young carers - half filled in the forms - that’s on the job list - not sure I like declaring the siblings schools but hey ho.

geko - I’m now on the waiting list that sounds great

mind jam - that starts sun 10 if he will do it - who knows.

Queensmeed in Windsor - omg that was an eye opener - it is the total wrong school for a pda kid - it’s completely crazy in there - I must of heard the work F* 100 times. Staff are trying really hard but that wouldn’t suit an anxious child as it’s far too noisy and crazy in there…. Lots of kids still learning phonics that look 10-12 yrs old - lots of kids in distress mode - lots of kids with helmets and having meltdowns on the floor. Keys to open rooms - I really didn’t like it. Sure it would be fab for some children but not for my pda child. He would be terrified. Suppose you need to check it out though 👍 it’s not a calm environment

it’s impossible to gain assess to other SS as they say talk to the case worker. However as we are currently arguing about TA hours at tribunal not sure I can actually get into these schools. Lots of “pda friendly” schools have said he’s too bright / it’s not suitable for him …. Blah blah. Even when I’ve rang round / sent EHCP they like no talk to the case worker. It’s a big 20 foot wall you fit…..

I’m reducing times - reading nightmare sen stuff as that just stressing me out so I’m ignoring things.

looked at a private social worker - only to do a report / assessment but not sure that’s another £1900 for a s17 assessment- but a 7 month wait for that too - plus i would have to go back to sendist if I wanted to add it at tribunal in sept which will be too late. I could try for nhs one but I’ve read it’s practically impossible. Suppose it’s only to gain respite but not sure it’s possible as he would completely hate it. So not sure if there would be any benefit ?!?!?!

adhd meds - wish stimulants didn’t have anxiety as a side effect as that’s why he’s finding lots of stuff boring - as we can’t use them as the side effect is worse than the benefit

im happy where he is at school until that breaks down - or he gets kicked out or to phase it better - “school say they can’t meet needs” he likes some bits - so that’s as good as it gets. He’s got a totally amazing LSA I did really drop lucky with her. She’s lovely couldn’t of wished for any one better - perfect fit. She totally gets him. No where really suits a pda kid as formal learning doesn’t suit - as it’s not essential in the pda eyes. suppose that’s when EOTAS comes in

Then we will have to see …. The rollercoaster of a pda kid.

onwards and upwards - another day today

9 days to go until half term 🤩🤩🤩

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Ilovechoc12 · 17/05/2022 05:27

He is a lovely child - he’s got a heart of gold - he trapped in a body that he can’t get out of….. where the world and people are scary place - it really can’t be nice for him. He’s trying his best.

I wish there was a hat / helmet I could put on for 48 hrs to feel how he feels …. Especially as he find it’s so hard to talk / express himself. Suppose he’s an introverted pda child

we will get there maybe and hopefully he will enjoy life 🤞🤞

we can only keep fighting for our children against LA 😡😡😡

listening to Eliza frickers podcasts on missing the mark keep me sane!

thank you for everyone’s comments / places to source help - I didn’t know about lots of things. I really appreciate it x

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Phineyj · 17/05/2022 07:46

Hi, I'm sorry you're having such a tough time. We went through this in 2020. But we only have the one. You are doing incredibly with 3 other kids too! I hope they can get some young carer support over the summer holidays.

You've talked a lot about what you're doing for your son but what are you doing for yourself? You can't pour from an empty cup and all that.

The most useful two things we did were book some NVR appointments (we used Jack at New Leaf NVR) and also to join a Facebook group for PDA parents in our local area (found it via the website of the PDA society).

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AReallyUsefulEngine · 17/05/2022 09:11

She was surprised we don’t have any help but who exactly could we ask

You can get clinical psychologist support via the EHCP.

Lots of “pda friendly” schools have said he’s too bright / it’s not suitable for him …. Blah blah.

Do you think they are suitable? If you feel they are suitable and they aren’t wholly independent you can name them as your preference anyway, and the LA must name them despite the school’s objection unless the LA can prove one of the exceptions.

adhd meds

There are non-stimulant ADHD medication which some with anxiety find better.

I could try for nhs one but I’ve read it’s practically impossible. Suppose it’s only to gain respite but not sure it’s possible as he would completely hate it. So not sure if there would be any benefit ?!?!?!

It is likely to be the LA’s social worker that assesses rather than one that works for the NHS. It isn’t always easy to get an assessment but is isn’t practically impossible. Did you ask SENDIST to look at social care provision too? If you do go private Cathie Long is excellent. It might be worth getting on the list because there’s no guarantee your hearing will go ahead on the date you have - many are being pushed back months due to lack of court time.

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danni0509 · 17/05/2022 13:28

@Ilovechoc12 you say about the stimulants and anxiety, ds is the same. He had severe anxiety anyway and my god methylphenidate made him ferocious!

He’s on atomoxetine now, non stimulant, worth a try.

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