Advice for what really helped you in everyday life (ASD/learning disability/pica)

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Our ds is absolutely adored (5y) but life is extremely hard. The pica is the worst thing to manage out of all of it. We have a natural garden and he eats everything from it. Grass. Flowers. Snail shells.

He is extremely hyperactive and will be assessed for ADHD in November. He legs it round the house going through lots of rituals: pulling towels off the rails in the bathroom, spilling the cats water (That's the only uncovered drink in the house). The other day he smashed loads of stuff on dh work space causing £100s of damage. Dh was chopping a brownie with our other son in the kitchen and was gone all of 30 seconds while I showered.

I think the answer might be some extreme SEND proofing measures to our home but I have NO idea where to begin. He is a climber so stair gates no good. Has almost 0 interest in screen time (he used to but has gone off it).

I'm going back to work full time soon and want to maximise my time with him and also work together with dh to plan a routine so none of us feel like we're losing the plot.

Any ideas if this is possible or just a dream 😁

You need a home OT assessment. That can look at making the home safer and better meet his needs.

Also has DS had a sensory OT assessment?

Thank you, I think that was mentioned by yourself on the other thread. Looks like I will need to approach the council. I own my home though so does that make a difference...I will have to look into it asap.

He's had no OT assessment . I was offered a sensory workshop which was a video call with a group of parents going over the 7 senses and being over/under sensitive to them. My ds is a massive sensory seeker and meeting his sensory needs is a huge challenge.

DS can still have a home OT assessment. If doesn’t matter that you are a home owner.

Does DS have an EHCP? Sensory OT provision can be included in there.

He does have an EHCP. It's not in there, I checked today. Actually none of his healthcare needs are in there and he has a few. I feel like the whole ehcp system is so confusing.

I think I'm going to call the GP on Monday to talk about the behaviours we are having. He tried to eat a snail tonight while DH and I were talking. I will ask for referral to OT too

Ongoing OT provision (mostly) belongs in section F (special educational provision) of the EHCP rather than section G (health care provision). This is important because it is then easier to enforce. It belongs in F rather than G because health care provision that educates or trains is actually deemed to be special educational provision.

You can request an early review to pursue OT in the EHCP.

Hi your son sounds very similar to mine, mine is 8 next month. He also went through a period where he lost interest in screens but over the last few months he's got back into that now so he will go on his tablet for a bit and sometimes he'll even sit on the sofa for up to 15 minutes watching TV. But the majority of the day he is just going up and down the stairs, throwing things around, and generally causing chaos all day. Does your son have a paediatrician? ours referred us to the social services Child disability team and they sent an OT to assess the house. I'm not sure if this is area dependant, we're in Yorkshire. To be honest they weren't hugely helpful they are doing a few things in his room (thing over the window to protect it, radiator cover, padding on the walls) but they seemed like they wanted to do as little as possible and she was quite opposed to anything that would be "restrictive" gates etc. she also did a recommendation for the garden to all be dug up and replaced with artificial grass so that it would be safer for him as my son also will eat mud, pebbles etc. however the council rejected that. It's also taking forever it's been about 6 months since she did the assesment and nothing been done yet. I'm in a council house and we will be moving to a bigger house in the next year or two as I also have a 10 month old baby and she needs her own room so I'm not sure if the reason they rejected it is because they know I'll be moving. I didn't really want to bother making loads of changes either when I know I'm moving. Once in the new house I will be having a lot more done. You can get a disability facilities grant which is 30k towards making adaptations to the house. I think with kids like ours it's all you can do really is to try make the house as safe as possible for them. Can't really give any other advice I do feel like I'm losing the plot everyday too

Thanks for replies all. He's only just had the EHCP review so I think I will get on that mid term review regardless. I'm only just starting to know about the help he could potentially get.

He does have a paediatrician. They tried to discharge him but I made a fuss so they're seeing him again in November to further discuss PICA, learning disability and ADHD as I was ignored about those and basically just told he definitely has autism which we knew anyway (private diagnosis).

Yesterday he dug up cat poo from the garden and ate it. (Me and DH were right bloody there). Every time we think he can't eat anything worse he goes and does it.

I am genuinely worried about going back to work FT. DH actually better with DS than me but DH has to have a lot of dental work done over the holidays. I think we're gonna need a nanny or babysitter a couple days at least over the hols to help us out. DH disagrees and doesn't want anyone else looking after him which I do get but we need to take some of the pressure off. I have no idea how you're doing it with a baby too!

I feel your pain OP. My son is the same. The best thing we did was get a child disability social worker. We were allocated a crap one first and was discharged then went back and was very insistent on being assessed again and got a brilliant one. She got us an OT assessment for the home (now battling with LA for council house as we rent and need several adaptions) and a small amount of respite, which means my other son actually gets some attention, as we spend most of the day cleaning up after our son or stopping him from killing himself. It is so bloody exhausting. Constantly buying sensory equipment and doing our best to protect son in our home, but its a rental and we are in need of another bedroom too. Do you have a garden? A trampoline built into the ground with a safety net might be good for your child self regulating. Our son likes to spin, so if we get him into a repetitive spinning loop with a plastic bowl or plate it can give us some time! As does a spinning chair.

You are both doing well to cope with all of this. I'm glad you and your DH are a team too as this makes a huge difference with managing.

Another thing we access is some activities through a charity, and although we are always one step behind our son and don't get a break as such, we are in an environment that isn't judgemental as it is other parents in a similar position (although not necessarily adapted to be safer). This takes the anxiety of weird stares away at least. Might be work checking out local charities and sometimes special schools offer play activities too.

Can I just ask if you manage to sleep too? We are eligible for higher rate DLA due to this and my son has recognised severe mental impairment. We are battling to get the SLD and ADHD formally recognised too by his consultant too, so this really helps. Consultant has diagnosed, but not formally assessed to the point we would get medication if we needed it.

I don't mean to derail, but what apps are everyone using on the iPad? My son is at one year old level, so even most autism apps are too advanced for him.

Thanks for your reply! We do have a garden. Unfortunately it's a natural garden and it's becoming impossible to let him out in it. He has a swing, slide and trampoline. He enjoys all of them on occasion, but unfortunately at the moment has become obsessed with trying to splash in the drains and dig up cat faeces to eat. Can't even hang 1 thing on the line without him doing 1 of these things. He has a spin seat too which used to be a life saver (got it to stop him constantly humping the furniture which was becoming a problem) but he's gone off it recently. He spent a long time lining up toys today (he doesn't really do this often) and watching cbeebies so today wasn't the worst day. He tried to eat some spider webs at his nans house, tipped the water bowls over again and crushed a load of pringles on the floor but I'd say it was a decent day!

Local charities hit and miss...have been to 1 group that I wanted so much to work but just didn't. The kids there were neurodivergent but not learning disabled. The room was just so loud and he didn't like it. There is another one that is brilliant and I really need to take him more as it's safe there. Normal soft play I just can't keep up with him and get panicked thinking I've lost him in the "blind spots". He does respond to his name but not if he's excited or overstimulated and he is Obsessed with soft plays.

Thank god he does sleep. He didn't for the first 2 years. He was breastfed and I was a broken woman lol. Once I weaned him sleep finally improved.

I spoke to GP and paediatrician who say he doesn't need occupational therapy so here we go again calling round/emailing/fighting when I have 0 energy but hey ho we do what we gotta do!

iPad wise he doesn't really use one. We are trying Weave Chat AAC for his speech. But we're very early days using it. There was an app called "Numbers" where you just press a number and it says the number and little balloons come on the screen. That was the easiest app that he could do but he went off it.

From your posts, DS definitely needs OT assessment. A home OT assessment. And a sensory OT assessment.

It can be a fight for funding for gardens these days, but have a look at a DFG to make the garden safer. Or charity grant funding towards the cost.

Family fund might be able to help too if you are on a low income. I'm glad you at least have decent sleep as dealing with this with poor sleep and working is a killer as I have found out! Do press for melatonin if it changes though as it does help a lot of people.

I think you need OT assessment and sensory assessment too. You are entitled to a carers assessment too by law I think (perpetual might know who posted above) so this might be one thing they can't decline. It does help to know your legal rights, but I find generally you always get a no before they say yes - you just need to challenge them to give their reasoning for saying no and also use the law/complaints process if needed.

I am trying to get LD and ADHD formally diagnosed, so I am going to the local commissioner where I am to going find out which NHS team is responsible for this and then FOI that team to see how much they are getting for it and how many people they are actually diagnosing. Sadly I think we will just be fobbed off without this 'ammunition'. It scares me how many people may have to fight this system who don't have any knowledge of their rights, or the energy to fight. They are really taken advantage of.

For sensory stuff have you tried weighted vest or leg/wrist weights or a body sock? Sorry if they are useless suggestions, but just thinking what we have tried. My son is similar but has mixed/changing sensory profile but needs lots of proprioceptive input.

My son isn't great with AAC either. Go Talk do a free trial where you can add pictures and text. It has PEIC style cards or you can take pictures (my son responds better to photos). It is a bit simpler than some other apps, although he uses Snap TD at school but not successfully.

I have similar with local charities. Quite a lot are for SEND children capable of doing things like bowling, role play games, swimming, making pizzas etc, which would not be for my son. There are PMLD groups but they seem to only take children who have physical disabilities too. There are a few things that cater for my son, but it isn't much, and quite a lot of the time you can't leave them at these 'short breaks' places as they don't really look after them and they come out having drunk a cup of glittery paint or something.

@Soukmyfalafel you are right, OP can request a carer’s assessment. On their website, Contact has a model letter she can use. They also have a model letter she can use to request a social care assessment of DS’s needs.

@perpetualplatespinning thank you so much for that. Definitely going to have a look at that. I've got so much on my list. Need to complain to the local authority because they are breaking his EHCP by saying speech and language therapy is yearly when his plan says termly, need to ask for a review to include OT...GP says it's not OT he needs but they have not been helpful otherwise. They just suggested the challenging behaviour foundation which has been helpful to be fair. I need to stop reacting to the PICA so much as I'm shrieking when I see him eating stuff and I think it's making him do it as a cause and effect game type thing.

I will do the carers assessment too. We have good and bad days. I know DH will object to social services as it's just negative connotations around that I guess. He's all "We can handle it!" Which we can...but it's not easy. All it takes is for one of us to be working/visiting family in hospital/etc and the day gets derailed!

@Soukmyfalafel Yes we're the same. ASD formally diagnosed but LD and ADHD, no. I got incredibly confused as the paediatrician said they don't diagnose LD and I had to speak to school to arrange an educational psychologist. But school spoke to the Ed Psych who said only a paediatrician can diagnose LD! Finally the paediatrician said they will see him again.

He's not really into weighted stuff. He has a weighted blanket but never liked it so I put it away. Sometimes he likes hiding under a bath towel! His favourite things at the moment are throwing empty water bottles down the stairs, lining up toys and just trying to eat anything that's not nailed down!

Yeah...he is entitled to holiday clubs but there's just no way. It takes him ages to get used to new people. And he hates loud children. He's just about ok with his classmates and will play alongside them but that took a while. We have free swimming for the holidays though, which is nice, as he loves swimming and it tires him out(!).

Is the SALT wording detailed, specified and quantified? Or does it have wording such as “access to”, “would benefit from”, “regular”, “up to”, “or equivalent”, “opportunities for”, “as appropriate”, “would be useful/helpful”, “as required”…

If it is detailed, specified and quantified, send one of IPSEA’s model letters to the Director of Children’s Services. The normal timescales of the complaints process mean it isn’t a suitable remedy, so if IPSEA’s model etter doesn’t work, you need a pre-action letter. SOSSEN can help with this, but there is a wait, so you might want to look elsewhere.

Unfortunately, if it isn’t detailed, specified and quantified, it can’t be enforced. You should try to tighten the wording up through the review process.

If the GP genuinely believes DS doesn’t need OT input, they don’t understand the scope of OT.

DH shouldn’t see involvement from children’s services as something shameful. It isn’t saying you are bad parents. It is saying you have a child who, by virtue of his disability, is a child in need.

I felt a bit embarrassed sending a child in need plan off for my tribunal paperwork, but it's more common than you think with this level of disability. I say it's a disability social worker, which people seem to understand and kind of spells out to people it isn't about child protection. I think anyone who knows you and what you have to deal with on a daily basis would understand that you'd need more support.

It is tiring dealing with services that pass you around and feign incompetence, when really it seems they just don't want another child on their caseload. I'm glad you got the LD diagnosed. I found the sensory needs assessment from the OT not that helpful as we had already read online and identified issues, and there is only so much you can understand with a non verbal child. The housing OT assessment helped a lot, but we have a long wait for council housing now.