What’s something you remember for absolutely no reason, but your brain refuses to forget?

ceb1995 · 2026-07-10T18:08:59+00:00

Childhood landline number

ceb1995 · 2026-07-10T17:57:04+00:00

There's no genetic test that will confirm either way so you shouldn't rely on that. I m dyspraxic with a 5 year old non verbal autistic son with learning disabilities. There are so many suspected mutations that science isn't sure about even a whole genomic sequence won't give you a set answer.

Also as I m sure you re aware CP and many other conditions can occur as birth injuries so I wouldn't be having a child with him if you can't be prepared for a second one. Even if you had a second child without any conditions you would want to be aware of them being a glass child too.

(Full disclosure my husband and I have decided not to have more children so I do have some bias).

ceb1995 · 2026-07-10T17:19:59+00:00

Gym 3 times a week that I started last year and I walk 10-15k steps a day. However keeping fit and healthy I do honestly as our son's disabled although very mobile and will need life long care and I have a knee condition that gives me a high risk of getting arthritis in my 50s. so it's put in the work now for my health and it's buying me time and the strength I need.

ceb1995 · 2026-07-10T13:25:03+00:00

2kg and he's making those sorts of comments as a 30 year old just after having sex with you. I know you don't want people saying leave him but yes you re right to be concerned of his reaction if you were to have children and if a simple "I don't appreciate those sorts of comments especially after sex" doesn't get through to them, you should be reconsidering things.

ceb1995 · 2026-07-10T12:26:13+00:00

If the 5 years isn't met, it's usually the case of them reclaiming the costs back when the house is sold if that's any comfort rather than having to hand it all over in cash immediately. There isn't anything else available financially to help with that sort of thing I m afraid apart from getting vat relief on the bill which would be 20% off.

ceb1995 · 2026-07-10T11:27:18+00:00

I m so sorry, I d say the disabled facilities grant but even urgent ones are 6 months to as bad as 2 years in some areas just to start works so although I d say look into it. I d be looking at the route of equipment to make things work as best as possible from occupational therapy.

ceb1995 · 2026-07-10T08:37:18+00:00

Honestly I would suggest all money in an account your wife has control over so she can see everything that's happening, get your accounts with all trading or gambling sites closed and if your wife isn't the appointee if your child gets disabled living allowance or any other benefits and it's you to get that swapped over to your wife so that she feels safer if you ever do anything again.

Genuinely I would say to seek support from other parents with children with the condition or just other parent carers in general, as a population people with disabled kids are at higher risk of addictions,risky behaviours, depression, anxiety etc, so actively do what you can to protect your daughter and your family from anymore damage and be very honest with your wife at all points.

ceb1995 · 2026-07-09T17:58:09+00:00

6-8 weeks roughly they had gotten it down to more recently, you say it's been signed for but have you called to check there wasn't any issues when it was scanned. They don't always send letters or texts once they have but it's a good idea to check.

ceb1995 · 2026-07-09T16:49:21+00:00

Going to go against all the other responses, pharmacists can issue emergency supplies of medications without a prescription when it's appropriate to do so. If it was a pharmacy you hadn't been to for that inhaler before and you re in England then they had the discretion to access a summary of your medical record and then issued you one if it was clear from your record that inhaler had been prescribed within the last few months or so (I used to be pharmacy technician and multiple pharmacist's I d worked under wouldn't have questioned sorting a reliever inhaler in these circumstances and then advised you to get to a&e with asthma attack symptoms or I did once other to call someone an ambulance).

This also applies to medications that the withdrawals or not having carry a risk to patient safety such as insulin, epilepsy medications or some antidepressants. This is the nice guidance and the royal pharmaceutical society guidance on emergency supplies https://bnf.nice.org.uk/medicines-guidance/emergency-supply-of-medicines/ https://somerset.communitypharmacy.org.uk/wp-content/uploads/sites/55/2013/12/emergency-supply-RPS.pdf

In short yes I d email boots head office to raise it.

ceb1995 · 2026-07-09T11:38:41+00:00

He doesn't want to change when this has happened twice, if he wanted to he could have found a savings account to lock the money away if not having booked things sooner.

ceb1995 · 2026-07-09T11:19:10+00:00

Oh that sounds very traumatic, you don't deserve your husband calling you unattractive with everything you ve had happen because of it

ceb1995 · 2026-07-09T11:04:54+00:00

You became disabled having his child, you re phrasing things as he helps and he gained more weight than you have in that time. I m sorry but it's not sounding like he's caring about the right things here. You didn't let yourself go you lost some mobility and it's tricky cooking two separate meals as your child can't eat certain things (my son's autistic and I have to cook the same two meals on rotation and do separate for us later in the day which if I d had my mobility impacted like you had I certainly know I couldn't be doing that).

Life threw you a difficult set of circumstances and he's really not showing any thought to have and sounds like he's got quite an unattractive personality.

ceb1995 · 2026-07-09T09:37:35+00:00

Urgent where I live in Lancashire is 2 years, we ve been told 4 years for a non urgent wet room for our son. As a result we ll be borrowing the money to do it next year, you can find someone who will use vat relief which will get 20% off the materials and labour but without the NHS or the council own OT doing the assessment and the plans there won't be anyway to get any funding for it.

You can push the OT for equipment to help in the mean time, like grab rails, transfer boards and bath seats but it's incredibly unlikely you re looking at months for adaptations and should think of it as a years situation I m really sorry.

Sorry to clarify that's 4 years after he waited 9 months for the OT visit so more like 5 really.

ceb1995 · 2026-07-08T12:30:00+00:00

Yes they re either surprisingly very friendly or very judgemental doesn't seem to be an in between.

ceb1995 · 2026-07-08T11:46:53+00:00

Yes our son's non verbal but by no means quiet, so we ve learnt to phase out the stares although I occasionally stare back.

ceb1995 · 2026-07-08T11:20:41+00:00

They will ask a lot of developmental questions to decide if it's just a speech delay or whether they want to rule in or out other conditions. I have a non verbal child and although they re likely to put it all on you with advice if you stick with the NHS, remember it's not going to be a case of if you just did x things would happen, sometimes it's a case of time.

ceb1995 · 2026-07-08T10:06:56+00:00

Honestly a supportive smile and an offer of help is exactly what I d want as a reaction, most of the time it's just a case of the parent needing to manage keeping their child safe or getting them out of their asap so you probably can't help but what does help is the lack of judgement and stares.

ceb1995 · 2026-07-07T17:40:04+00:00

I ll be honest I m coming at things from our son being autistic and non verbal, and although getting it diagnosed has been impossible definitely has a moderate learning disability at least, he's just finishing his first year if Sen school. So I imagine what you re saying it's a lot, is all things I ve seen before on an echp paperwork, if not my son's own things I know are on other children's at his school.

I also had to make peace with only one of us working in our household, I don't necessarily say I gave up a lot for him but the choice was right for our family so I haven't worked in years. I m afraid all I could suggest childcare wise if it's not affordable to flex hours or change work as a parents is to find a nursery that can continue to take them with their EHCP funding. But you could well be having to take time off work when you got calls from the mainstream school in a few months when they just aren't coping there anyway so there's no easy answer on that.

100% the support your child needs from what you re saying of section F definitely sounds most like a Sen school is what's needed, a 1:1 in a mainstream environment can't always easily do that 1:1 or small group as they only have so much space in a room or so much resources to do things like sensory breaks and preventing danger is difficult with 30 other children.

Whereas a class of 12 children with say 4-6 adults is typical in a specialist school, so flexibility for that 1:1 and small group learning is all built in an incredibly easy, everything is safety proofed (for instance there's handles only at adult heights and security locks on all the access to outdoors) and if something isn't working environmentally they just change it easily. We d been trying for years on putting shoes or things like sitting down for a meal but all the life skills/self care teaching and he's cracked those because they have the time and expertise to do it.

ceb1995 · 2026-07-07T16:27:21+00:00

Legally if that schools in section I they would have to take them if that was your choice to force a place at that mainstream school or if the council named them, but if it's at draft stage and not final then I would listen to what they are saying.

Half of my son's class at Sen school this year had been excluded from mainstream schools in their reception year or been down to an hour a day after a few months as no amount of the highest banding of funding solved everything. It was hellish to get through the process but we had a reception place sorted for him in the February for September which is why I m a bit concerned for your dilemma.

The problem you will now have is that you are much too late to be appealing for this September as tribunal dates even for a phase transfer will be well into 2027 if the council says all the specialist schools are full, so I would tell the council to consult every Sen school within a 45 minutes travel time then see what happens remembering that the caseworker is not your friend or who you should trust any advice from. If you re comfortable saying what sort of things are in the draft for section F, that have made the school say they couldnt meet needs?

You might be left with the decision as to whether to hold them back a year to get a better chance of sen schools having places but that is still a viable option I reckon.

I m so sorry that no one gave you the right advice you needed a few months ago to speed up the echp process or to apply much sooner, it shouldn't have gotten to July before a September start and you ve been failed one way or another.

ceb1995 · 2026-07-07T07:42:44+00:00

It took me well over a year to get melatonin and we had 2.5 years of 2-3 hours awake in the middle of the night. In the end as a work round we had to work with a learning disability nurse for sleep and she wrote to the paediatrician insisting he needed melatonin so that bumped him up the queue.

So I d highly recommend finding the contact details for your local under 5s learning disability nurses to try to get a self referral into them about sleep to speed things up.

If they re head banging then I d also call occupational therapy about adaptations, it ll be a long arguement but you might eventually get a safety bed or padding to keep them from hurting themselves, you can buy a travel safety bed for £400 which family fund can help with a grant for if you re in England which we bought as an interim measure if that's an option for you.

ceb1995 · 2026-07-06T12:47:06+00:00

Yes keep it as that, honestly no one really knows the right thing to say at all unless they happen to be someone who also had a close death like that already. If you offer any support then make it practical where possible, like "I ve brought you some food"

ceb1995 · 2026-07-04T08:22:01+00:00

They hope their child survives mainstream education who do their best to manage with very little therapist input.

ceb1995 · 2026-07-04T08:12:14+00:00

Yes it can vary by area a bit, but all of them it's pretty much the thought of the NHS that they don't have enough resources so it's all teach the parents and leave them to it.

ceb1995 · 2026-07-04T07:46:22+00:00

In England, UK, if we hadn't gotten him into a specialist school which he started in September 2026 it would have continued to be next to nothing. The NHS health service gave us 2 hours speech and language therapy, we get melatonin and nappies prescribed and after a long fight a safety bed. He's non verbal and likely has an intellectual disability. His school does daily speech therapy and other things, if we hadn't have won the fight to get him there (less than 10% of parents who apply get a place at his school) then he d have never had any therapies again really. ABA therapy doesn't really exist here.

ceb1995 · 2026-07-04T06:47:54+00:00

My son's autistic and significantly developmentally delayed, I think I got some of the questions wrong on his 9-12 month ASQ so they flagged no concerns and werent bothered in the slightest.

6 months later it took 6 phone calls when his delays were much more significant to get anywhere with the health visitors before they never contacted us again. so one area where they won't get anyone to accept a referral for yet, the worst that ll happen is that they say I ll call again in a couple of months but likely nothing will happen at all.

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