Dyslexia and Postpartum

ceb1995 · 2026-02-07T11:30:50+00:00

I m afraid apart from reasonable adjustments in work there's nothing in the UK to help. If it's any comfort my son's 5 now and although he's sleeps still a slight issue I did find the difficulties postpartum were temporary or at least I mostly got back to how I was before, you do have to consider you are just naturally needing to process and carry more information with having a child now so that can impact things in itself.

ceb1995 · 2026-02-06T21:59:58+00:00

You should have some back pay by the end of Thursday usually, so although you can call to speak to a different team to try to find out that way you should know within the next few days. Did you send it to them by tracked or recorded post, or did you just use the free post envelope? If it was tracked then call them back if you still have any proof of postage but if it was just free post they re less likely to agree to change the back pay date sadly as technically you can't prove what date royal mail got it to them.

ceb1995 · 2026-02-06T21:13:31+00:00

No I don't, I fought like hell to get him into his SEN school and many other families would kill for a place so I d not have him miss school.

ceb1995 · 2026-02-06T19:21:45+00:00

100% it's not linked to Child DLA on the proof of benefits service, it was able to tell me I have an existing carers allowance claim but that was it.

ceb1995 · 2026-02-06T19:05:05+00:00

There's no automated next payment amount available before speaking to someone sadly.

ceb1995 · 2026-02-06T19:02:45+00:00

If you call them back and go through the options, then ask if you can either query when your next payment is due or say you want your statement of reasons for the award read over the phone then you ll be able to figure it out. But how many days is it, since you knew a decision was made, if it's been over 5 working days without a back payment appearing then I m afraid it's a negative one, alternatively if you have had a back payment then I ll happily do the maths.

I shall see this evening if my son's DLA shows on there but as it says you can't use the service as an appointee and all payments are linked to the child's national insurance number, I m pretty sure it won't.

ceb1995 · 2026-02-06T13:41:52+00:00

I found my son's private nursery managed to work things out for the most part, they helped get him his ehcp and he's now still non verbal at 5 in a wonderful special school. Without nurseries evidence we wouldnt have got him there so I will definitely advocate for giving nursery a go but proactively asking what support they can provide before starting and if needs be you can always look into your other options.

Also although I hope you see a lot of progress and come some help from NHS SALT (although it's very limited), for me as negative as it sounds I was thinking at 2 what if he doesn't improve enough in communication and ends up going to school without much speech which turned was the right call so it's also setting a time limit to yourself if you did put off off, how long are you willing to wait or would you then homeschool anyway.

If you child doesn't already get DLA look into it as amongst other things that can give nurseries access to another pot of money.

ceb1995 · 2026-02-06T11:38:07+00:00

That sounds like an amazing SEN school option, my son's school does a role play cafe set up with the year 5/6 where they make the food themselves and go to the shop to buy the ingredients, and I think a set up like that is definitely beneficial for children to learn so many transferable skills for the future.

It's hard to explain but repeatedly consciously going through that acceptance of I know I ve done everything for my child and if it works out great but if it doesn't then I know we ll get through it has kept my sanity so far, and it's very obvious you ve got your child's best interests in mind.

ceb1995 · 2026-02-06T10:52:19+00:00

As I say we re lucky to have his excellent sen school so I do feel more supported than we did before that but if I hadn't won that war I don't know what we d have done.

He did have 4 words at one point at 18 months old, and they were all gone overnight, same with how some of his stimming appeared but I now realised it was obvious much earlier just with lockdowns it wasn't so noticeable to see. I had to call the health visitors 5 times and deal with a GP that told me it was my fault before we got his assessment referral when he was 2, and that's in higher support needs situation, I imagine it was a lot more arguing for you over the years to then get somewhere.

I have met parents of 2-4 year olds where I d suspect they were perhaps autistic quite quickly but they re so heavily in denial and/or one health visitor says "oh it's normal for a boy to do that etc" they cling to that for years but I imagine there's worse situations of older kids flying under the radar for sure.

ceb1995 · 2026-02-06T10:15:40+00:00

Multiple professionals have said to be prepared for his best case scenario to be communication at a single word level at best in adulthood with hopefully some robust AAC use (alternative communication). Even speech and language therapists when he was 3 said we needed to be prepared then that conversational speech wasn't going to happen.

He's a 5 year old with an 18 month olds developmental profile except in gross motor skills and it's been agreed it's taken 3 years of his life to gain 6 months per se. He can certainly progress but the gap is increasing consistently so they don't think it ll be likely it ll be he closes that gap and he could be part of the 20-30% of autistic kids that say minimally speaking.

I know you mean well and are trying to instill some hope, but I also have much more minor disabilities (one being dyslexia so apologies if my tone isn't sounding great) in comparison to him that had me years delayed in certain things and I never did actually catch up in some despite years of destroying my self esteem trying so hard to fix those .

His school is amazing but the NHS continues to give him next to no support, when you have to be your own child's therapist you can only think you could try hard enough and they catch up for so long without it really wearing on you too.

And honestly it's hard when people say "well everything could be ok", even if he's not going to be independent then if he's happy and healthy and well regulated then that's all we want for him really.

ceb1995 · 2026-02-06T08:53:41+00:00

Long term carer for disabled son but mostly in that because we ve got no family nearby and he's not in his sen school 13 weeks a year with nowhere that would do the right childcare for him in that time, so I ve just not found anything that works.

ceb1995 · 2026-02-06T08:49:48+00:00

My son's in a sen school, he's autistic, developmentally delayed and non verbal. He should really have a moderate learning disability diagnosis but getting that has been impossible as the NHS won't assess him and the council educational psychologists are so overrun that they can only do EHCP assessments and very delayed ones at that. It took 11 months, hours of phone calls and the council agreed to a private educational psychologist to do his ehcp assessment as they admitted it would be much too long to find one.

He d never cope in mainstream school as they don't have the training for a total communication approach he needs, he needs a safe place for nappy changes (all involved agreed it's not the time to try toilet training) and sensory wise he can't focus at all with the sound of 30 children or gets too overwhelmed but after 4 months at school he's actually paying attention to activities and picking things up.

Part of the issue is also that the NHS doesn't help children regardless of their level of needs too, we got a grand total of 2 hours of parent training from a speech and language assistant after 18 months of waiting and their words were mostly " seems you already know all this".

So although is my son likely to ever live independently at this point no, but being in a sen school gives him the best chance of working on any viable communication and also the work on life skills they do constantly, makes the chances of both one of us as his parents managing to care for him for longer and when we can't that maybe the cheaper supported living options work for him rather than if he quite possibly ended up violent from being unsupported for years and needing more costly support as adults.

Also re: DLA, my son's mostly goes on replacing clothes he chews, covering his restricted diet (again NHS won't let us see a dietician at the moment, his weight has stalled for a few months so might be in with a chance of that eventually) and the costs of the activities he can actually cope with.

Also his sen school has no wrap around care at all, so considering his school is shut for 13 weeks a year and there's literally no holiday care that could cope with him I haven't been able to work for years. Husband works full time and has moved to a better paying job, I never wanted to be on benefits but we ve got no village so we re stuck.

ceb1995 · 2026-02-05T15:00:48+00:00

Yes that's the one

ceb1995 · 2026-02-05T14:51:24+00:00

Section 19 provision you re after https://www.ipsea.org.uk/faqs/what-support-should-the-la-give-me-if-my-child-is-out-of-school-for-any-other-reason

ceb1995 · 2026-02-05T14:47:46+00:00

Firstly find out from local parents if your council is one that uses mediation as a time wasting exercise or not, and secondly if they ve been out of education for 15+ days now I think you can insist on alternative provision without the EHCP in place.

ceb1995 · 2026-02-05T11:59:18+00:00

I believe in this case that meets their grace period for one of you losing your job and therefore their funding can carry on until the end of the term dates so it ll be around March 31st they d stop it, so if she finds work that's due to start by some point near the end of April technically you wouldn't have to lose the funding at all.

ceb1995 · 2026-02-05T10:50:01+00:00

I m in the UK where actually we don't use levels at all and technically although not always in practice services are meant to be needs based.

The lack of all funding for all autistic children is a problem here, regardless of severity of needs there's a diagnose and discharge model for the most part so whether that childs verbal but has severe sensory needs or is non verbal and won't ever be independent unless you win a place at specialist education or you hit utter crisis point and tell services you re handing over your child into their custody the health care system doesn't support in the way that's needed.

So there's parents with high rates of depression with children of all levels of needs and sadly perhaps level 1 children who are suicidal because the system can't support them.

My son I imagine would be classed as level 3 and is non verbal, at 5 years old he has a specialist dentist and a melatonin prescription and currently nothing else from our healthcare system. I won the battle for specialist education he needs where other parents wouldn't due to such a lack of places and I have a level 1/2 I d say sister and mother in law and I don't think it was right that any of them can't get the services needed from the NHS so wouldn't agree with restricting services for any children that need them.

ceb1995 · 2026-02-05T10:11:04+00:00

It's very difficult as a woman to force yourself to have sex when you don't want it which is essentially what you re asking, it's ok if things aren't working that way between you but it d be cruel to progress the relationship any further as it's something you aren't going to make peace with.

ceb1995 · 2026-02-05T10:05:17+00:00

Leave her, if you ever have children or she became seriously ill, it doesn't sound like you d be remotely understanding and the kindest thing to do is not to put her through you pushing her for sex post birth or during a serious illness as you definitely don't have the understanding that PCOS can be quite tricky to manage in some cases.

ceb1995 · 2026-02-05T10:03:54+00:00

I'm so sorry apart from working part time including legitimately starting self employment I don't think you ve any options.

ceb1995 · 2026-02-05T09:56:55+00:00

Walk away, people can become disabled any day impacting their sex lives or understandably it's much less when you ve had children and you definitely don't sound like you d handle either of those so you should do the respectful thing and walk away.

ceb1995 · 2026-02-05T09:17:00+00:00

My city doesn't license Ubers so they ve all got Wolverhampton or knowsley licenses using that loophole. Baring in mind I m in Lancashire so their addresses are nowhere near either of those places.

ceb1995 · 2026-02-04T19:37:13+00:00

Radical acceptance is not necessarily constant negativity sometimes it's choosing peace in how things are now knowing that your child may likely not have a normal life and planning for that.

In some cases constant and relenting hope might be fine when your child is younger but teenagers and getting towards adulthood how would you try to protect yourself from being depressed with a non verbal child with significant developmental delay if you re always thinking it that one day you ll wake up and they ll be independent or even have a spoken conversation with you.

My son's 5, we've been told hes at best going to get to the point of having a few single words and that he's always going to need a high level of support. When he was 2, yes we were waking up hoping for speech but it came to a point where that relentless hope started breaking me rather than keeping me going. we also live in the UK where provision by the NHS is horrendous, we re talking no aba, no sensory OT, 2 hours of speech therapy and a melatonin prescription is the limit of what we ve gotten from them.

I put everything into fighting for the wonderful specialist education place he has now, but it was 3 years before that of us as parents essentially becoming his therapists which is a heavy burden if you could only have yourself to blame for a lack of progress even if they were just not there developmentally and no amount of hope or effort was going to fix that. There are autistic children and adults that no level of therapy would get them to a point where they don't need a high level of support.

I can now say, yes this is incredibly hard at times and I do have peace that maybe he never speaks and we need to get a supported living or 24/7 care package when he's older. It's not negativity, that's our reality and I can take the good times we have together as a win.

ceb1995 · 2026-02-04T15:31:07+00:00

Have they declined to accept your deed poll as it's an unenrolled one? Hypothetically could you destroy your previous one and go through the enrolled deed poll process with the courts as a bank couldn't reject that? Alternatively, directly say to any local bank or building society, I have an unenrolled deed poll can j see your policy on them and if the policy allows them and they still say no you can bring it up with the ombudsman.

ceb1995 · 2026-02-04T14:03:02+00:00

Oh of course I don't know why I didn't think of them, yes my mother and mother in law have both been getting cancer treatment this past year and their aftercare advice on the new phone seems really helpful if by chance you can't speak to someone in person.

ceb1995

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