I'm not even coping

[CoffeeLover90]

I don't know what I'm hoping to gain by posting, advice, a hand hold, the opportunity to vent...
DS almost 4, ASD, he's just crying. Not really crying, more like a whine. It feels constant. If he wants something, rather than ask he'll whine for it. If he has to wait he just gets louder and louder. Sometimes a melt down then starts seconds later. Going through a stage where he believes everything is his. Whines on days out, whines at Bath time (which he loves) whines getting out the bath.
I feel like shouting. I know I shouldn't, I have a couple of times in the past but it doesn't work anyway.
Holding doesn't work, distraction, ignoring, nothing.
I'm a single parent, I'm working full time, I'm close to burning out. No one will look after him to give me a breather, I'm not going to bother asking.
I feel like crying myself most days. I try so hard to make him happy. Days out are always centered around what he likes, I read stories every night, for up to an hour, he has many toys, the garden is packed with what he likes.
He used to be so cheery. Now he is still, he's loving, kind and caring, but the whining moments are just on and off all day, every day.
I've ranted enough. Didn't mean it to be this long.

I'm sorry you feel like that and it's rubbish. But you are stronger then you realised. You are doing great.

My non verbal asd son is 5 and I never feel good enough. I'm sure we went for the whining phrase and it does end But you need some support. Go to your GP, child paediatrician, health visitor and tell them you need help.

If you can send him to nursery and have a day off.

xx

That sounds really tough. I take it he doesn’t see his df or family from that side? Do you have family nearby?

I agree with PP about GP, HV etc.
What makes you think nobody would look after him to help you out? I think if you are able you should tell friends and/or family you are struggling and ask for some help. It’s a lot to bear by yourself

Home Start might be able to help.

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DS.

If DS was diagnosed within the last year Scope can offer mentoring.

I'm reading the replies through tears. I have told the health visitor and the GP since he was one year old. Nothing. He's not even diagnosed yet. He saw a pediatric eventually 2 months ago and I've just received an appointment for a follow up.
He goes to nursery for 30 hours a week.
I know family won't help because I've asked. I've said I'm tired, I just need to rest. The most I get is an hour once every couple of months. He's stayed out twice in the last year.
I honestly feel like no one cares.
I broke my foot a few months ago. No one would watch him while I was in a and e. I took him with me. He had a melt down after 30 minutes we left. Because if no one will help for a few hours how the hell was I meant to cope with a cast on for weeks?

As well as those diagnosed in the last year Scope can offer mentoring for those undergoing assessment too.

I’m sorry things are so difficult for you. It’s great that he’s had a paed appointment and another one booked. Be honest with the paed and tell them how much you are struggling. Go back to the GP and tell them again. You will have to advocate for yourself in the same way you would for your ds.

It shouldn’t be this hard, should it

Thank you for the replies. I have been honest with professionals, I'm not offered anything, I've looked online for support groups in my area and I haven't found any.
All I need is a breather, just time to sit and do nothing, to be alone and rest.
I'm cautious to use annual leave because I need that for his appointments.
I've got a very good, supportive employer though so I've decided on Monday, I'm going to be honest and ask for a days leave on a day he's at nursery, so I get my breather. It's my only hope at this point.

Unfortunately you won’t be offered anything without fighting for it and enforcing your/DS’s rights.

Does DS have an EHCP? If not you should request an EHCNA. If he does already have one you need to request an early review and potentially then appealing.

Have you had formal social care assessments? If not, do request them. If you have you need to ask for updated assessments, then if not given appropriate support complain, ask for an independent review and complain to the LGO. Depending on specifics judicial review is sometimes possible. And, if you appeal the educational provision in the EHCP you can ask SENDIST to consider social care provision.

Have you looked at parental leave? Although it is unpaid.

I've spoken to LA about EHCP and SS support. They won't give him either without a diagnosis. Despite pushing, for 3 years he still doesn't have this. He has an initial report from 3 months ago when he saw pediatrician. This still wasn't enough as he needed the diagnosis. His appointment is at the end of the month. I've appointments booked with the school this month and next ready for him starting and they're treating his transition as though he already has the diagnosis. This thanks to his nursery who have been very supportive. There is support, in way of extra funding, when he starts school but this is more to help him in mainstream. He copes very well at nursery and there are no concerns about him settling at school.
It's this whining stage he's entered. And I'm hoping it is a stage and it will pass. I am fighting and pushing to make sure he has any support he needs. That's not my issue, I also don't expect him to be cared for on a regular basis. Just a one off, now and again, family could take him out for a few hours to spend time with him and give me a break. I grew up thinking that was normal. We were always staying out or dropped off with family.
I'm asking my manager about a day of leave on Monday. Whether this be unpaid or I make the time up. I haven't been there long but they are absolutely fantastic.

Refusing an EHCP and social care support based on not having a diagnosis is unlawful.

You don’t need a diagnosis for an EHCP. You can force the LA to assess and issue as ultimately it isn’t them you decides. Have you formally requested an EHCNA and appealed the refusal to SENDIST? If not, formally request an EHCNA (IPSEA have a model letter you can use) and then if refused appeal. To understand the process better IPSEA and SOSSEN’s websites are worth reading.

A diagnosis also isn’t required for social care support. If this is the reason they have refused JR is likely possible. You could complain, ask for an independent review and complain to the LGO. It could also form part of an EHCP appeal.

Obviously it is your choice if you don’t wish to go pursue an EHCP and social care support, but they can help and neither require a diagnosis.

The EHCP is starting when he starts school. As far as fighting for it now, I don't see the need. He has a form of care plan at nursery, which I can't remember the abbreviation, he has 1 to 1 support and I have regular meetings with the senco.
I'm sorry, I've had these conversations on here before. It will be in place by the time he starts school. The LA have said he needs to be under the care of health professionals for a EHCP, he doesn't have any. He will have when he has a diagnosis.
None of this helps me.
I'm doing all I can to support and encourage my son. He's made fantastic progress this last year.
I posted to vent about the fact that I get no break. It doesn't matter if I'm ill or injured, I'm just expected to carry on. Now with this new phrase of whining constantly and the extra melt downs that come with it I just want to sit with a cup of coffee and a book. A couple of hours will do.
EHCP won't change this. SS won't change this.
Since posting, I've spoken to friends and I've decided the only option is for me to take a day's leave. I'll at least get a couple of hours break while he's at nursery to unwind.

An EHCP and social care support can help and can change things. A good EHCP and social care support can provide provision and support you and DS aren’t currently getting, including a couple of hours to sit with a cup of coffee and a book.

DC do not need to be under HCPs for an EHCP, that is another unlawful myth. Although, if DS is under peads he is under a HCP.

It will be in place by the time he starts school.

If an EHCNA request hasn’t already been submitted and DS starts school in September it won’t be in place by the time he starts school. If he starts school next September and you have to appeal more than once, as many do, it won’t be then either.

It’s an education, health and care plan so can include things other than educational provision if relevant.

In general, if a child is well supported in school then it has a positive effect on home life. An ECHP can help with this. It’s very unlikely he will get 1:1 support at school without an ECHP as schools just can’t afford it - the EHCP provides extra funds. Many schools are now operating on a deficit due to funding cuts and are having to cut TA support.

When you say whining, do you mean complaining or a whining noise like a stim?

It must be incredibly hard parenting alone. Take whatever respite you can.

The process of the EHCP is going through the pediatrics, I don't think I'm explaining anything well at all here. I've been on the phone chasing him for 3 months, I then tried to get the appointment brought forward with no luck.
I appreciate, in an ideal world, respite would be given as part of EHCP. In reality they've got the bar set so high its not achievable. Maybe because Services are stretched to the max here or maybe they're shit. Don't know.
Please don't think I just sit around thinking everything's OK, it'll all work out, school, childminders, EHCP... it's something else I'm worried about. Something else I'm on the phone, writing, filling forms out for.
I'm not going to get the respite this way, I know kids with much higher needs than my son and parents who at rock bottom that don't get this.
I'm talking about a trip to the park, beach etc once a month, once every couple of months. Really is that a lot to ask?
The whining isn't stimming. It's him mimicking other children who do it occasionally but he's turned into a constant way of talking half the time.
Then there's work, that's stressful.
I've a house to take care of.
It's a lot for one person to handle but offering me help, ignoring my pleas has just made me feel so let down.

EHCPs are via the LA, not paediatrics. Paediatricians can request an EHCNA just like parents and nurseries can, but the process is via the LA, not paeds. If paeds have requested an EHCNA what week are you on? Have the LA informed you whether they are going to assess or not (this has to be within 6 weeks)? If they are going to assess has all the necessary advice and information been sought e.g. SALT, OT, EP (anyone asked must respond within 6 weeks)?

Respite is achievable, both as part of the EHCP and separately. I know you think it isn’t, but it is. It’s not easy, but it is possible.

Reading up on the law will help you understand the system better. Unfortunately, DC whose parents know the law, how to enforce their right and can advocate for them get better support. It shouldn’t be like that, but it is and it isn’t going to change any time soon. So it is important parents know what should be happening and how to challenge the LA. IPSEA and SOSSEN’s websites are good places to start.

@CoffeeLover90 I hear you. It's one thing to say get an EHCP in place, but when you're already to the wall with exhaustion it's hard to find the extra energy to fight EVEN MORE than you already are to get that support.

Have you tried finding any local SEND parent groups already? I'm just wondering if there's a fellow mum you can "buddy up" with, who knows the challenges, and you can take turns babysitting and giving each other a break? Maybe you can find a "partner" mum nearby? I don't in any way want to minimise the feat you are pulling off doing this on your own, but I do have a partner and I'm still trying to build a relationship with a fellow mum from nursery in the same boat because DP really is not much help and I don't have family nearby except for some really elderly in-laws who are lovely but not physically capable of looking after him for any length of time. I totally understand the feeling of just wanting a couple non-working hours where no one is whining at you, grabbing at you, limiting your ability to move around the house let alone actually go out of the house. It's the "touched out" thing times a million and it seriously affects your mental health.

Also, have you already tried asking the nursery if any of the staff babysit on the side, or if the 1:1 might? Anyone you know your DS has a good relationship with? That's been my go-to for the few times I've managed some child-free time. Failing that, I've had great luck on childcare.co.uk on the few times I've used it. Obviously it's paid-for childcare, but if you're weighing up taking any unpaid leave just to get a break then maybe it'll still be worth it.

@Scratchybaby Thank you ❤
I don't mean to come across as snappy. I've posted about support in getting access to services, EHCPs etc before. I've spent hours online, on the phone, with nursery SENCO, the school. I am fighting, that's another reason why I'm tired.
Yes, I understand you can get respite through these channels but that's not what I even want. I'm not going to fight for it.
I probably should have worded it better. Really, it's the fact family have always assured me that I'm not alone, they'll help etc and where are they??
Yes, I've looked online at support groups. There's one but it's for children attending one particular special needs school and the next closest is a 90 minute bus journey. I can't imagine anyone there would be willing to share babysitting 😆
The only one at nursery that does child care outside does not work evenings or weekends. So it would be pointless as I'd be working and he'd be at nursery anyway.
I've had a good chat with a couple of my friends today. They are wonderful but limited to helping practically. They agree that, short term, I need to take a day's leave while he's at nursery. Just so I don't crack. You're right childcare.com is good and the next step is finding one with a couple of hours free on a weekend, just once a month or something so I get a consistent break.
When he starts school there'll be a broader group of parents, the ones I run into at nursery all seem to have known each other a while and aren't open for a chat, I've tried. Hopefully from there I'll meet one or two willing to swap baby sitting.
And I'm not asking family anymore. It just ends with me feeling let down

Absolutely no-one has posted you aren’t fighting. The replies are trying to provide you with information on how you can improve your/DC’s situation because, by your own admission, you are close to burning out.

You may have asked about EHCPs previously, spoke to nursery, school, the LA, spent hours online yet you are still confused about the EHCP process. You still think a diagnosis and to be under a HCP are necessary for an EHCP and that paediatrics do the EHCP which is why you are getting the replies you are, and why it would be worth you reading IPSEA and SOSSEN’s website to understand the actual process and law.

I wasn’t sure from your post if he likes the bath. I used to put my child in the bath at all times of day for a break and grab myself a cuppa and loosely supervise him. In winter time especially daytime baths as an activity were a godsend.

Oh god I feel for you so much. I understand the need for vent. I have an 8 year old with ASD and another 7 year old and no one has them for me either. They haven't stayed out since they were babies. It feels foreign to me too as that's how I grew up always staying out ect. Things are so different now I find. I really hope you find the time you need being constantly stressed is hard work. never mind a job too. If it helps at all I find they do go in and out of phases. Hopefully this will pass too. I wish you all the best! Xx