2 SEND toddlers and feel like I’m drowning

[LittleRobins]

I live about 4 hours away from my family, have no friends and cannot drive. I live in a small village with my husband and our children, DS3 and DD2. They both have SEND and are on the waiting list but are certainly both autistic (it’s in the family).

Basically I can no longer cope and am wondering how anyone gets through this? DH works long hours but helps around work with nappies and getting them to sleep etc. DS3 goes to a local nursery for two short days a week but they want to reduce his hours as they say they cannot keep him safe. He’s a lovely boy but has no danger awareness and won’t leave fire exits, toilets etc alone. He has speech delay and little understanding. He’s really not just naughty, he doesn’t understand why he shouldn’t do these things and can’t understand the language used when people try to explain to him. His speech has progressed recently though.

DD2 is due to start at the same nursery in a few months, she has more delays that DS and is totally non-verbal. She needs help with eating.

I am exhausted. I desperately want the best for my children. I don’t feel like I can provide that as I am so burnt out. I don’t sleep, I am suffering from such severe stress that my physical health is being impacted in numerous ways. I can’t help but worry about the future. What does that even look like? Will they need our support forever? What if I die?

We have regular appointments with a speech and language therapist who is brilliant. Our HV is not great- very rushed visits and not much help at all. But then what would help even look like? Nobody can magically move in with us and tell us what to do and how to look after them. They are 3 and 2, what will my life look when they are 13 and 12. What if they are still in nappies and non-verbal? What’s the point? I have no emotional support, no time for myself whatsoever to attend counselling, I work freelance around the kids when they sleep.

How are so many families going through this with SEND children and there is still so little help or understanding of what families like mine go through. I feel crushed. I don’t know who I am anymore or why I’m posting this other than out of sheer desperation that maybe someone can reassure me that things get better or maybe there’s some support I’m missing.

This sounds so challenging for you. You must be exhausted.
If I lived near to you I would absolutely help you if I could. I expect help and support may be difficult to obtain in a small village.
Nursery should be able to apply for Preschool Inclusion Supplement fund to support with extra help or resources. Is the speech therapist advising them or providing symbols etc?
They shouldn’t be trying to explain things to him but be using reduced language.g. Stop supported by a flat hand gesture and symbols.
Ask your speech therapist about symbols at home or learning Signalong signing.
As a parent, although it’s natural, try not to think too far in the future. It’s too much. Early intervention and the right support can make so much difference for your children and yourselves.
Speaking to others in the same position can help so much.
I know you are feeling overwhelmed but try to prioritise what is most difficult for you / your DC right now and seek help or look for strategies for that.

Feel free to PM.

Thank you so much for your reply @24Dogcuddler . Nursery have said they are contacting the SEND council outreach system for support but they just seem like they want to get rid of him. He came home in a leaking wet nappy yesterday as they said he was too ‘kicky’ to change and he’s left out of all the group events. It hurts my heart. SLT are visiting next term and have mentioned using symbols with him to see how he responds.

I feel like this is just the first fight of so many to try and get equality for him and goodness knows what they’ll say when they meet DD as they aren’t aware of her needs yet. How do people do this? I just feel broken all the time, this is no life for any of us.

This is a really difficult position to be in and I can feel your desperation. I know all children are different, but 2 years ago I felt like I was drowning with my then 3 year old (now diagnosed with autism) and my 1 year old.

Things were really tough and looking back now, I don’t know how I got through the days. We still have our challenges now but things feel a little lighter, as there is more support in place.

Your nursery should be able to apply for inclusion funding to help them support DS’s needs, this might be able to provide a higher ratio of adult support. At her private day nursery, this funding meant DD got 1:4 support whereas otherwise the ratio would have been 1 adult to 8 children.

When she moved to a school nursery (in a different area) the year before starting reception, this funding would have provided a full-time 1:1. By then she had an EHCP anyway.

It’s really hard but nursery need to apply for inclusion funding, they need to start the EHCP process or you can do this and if you are able to apply for DLA, you could use this for additional therapies, resources etc as you see fit. More info on EHCPs here - https://www.ipsea.org.uk/pages/category/education-health-and-care-plans.

But I know when you’re in the thick of it it’s really hard to start these processes on top of caring for high needs children and when you’re sleep deprived and never get the chance to have a break. I’m also 4 hours away from family so I feel your pain.

Once DD was better supported in nursery, things at home started to get better. Hopefully this will be the same for you.

Ages 2-3 and 3-4 were really hard for us then things got a little easier (but still hard at times) from age 4-5 onwards. I worry about the future too but just try to take things one day at a time as that’s all you can do.

My son is now 22 yrs old and the early years were definitely one of the worst times. I also lost myself - caring for him, working, caring for his brother - something had to give.
Do you have a social worker? Have you applied for DLA. Also as pp said planning for an EHCP and looked at schools - specialist nursery? This might seem overwhelming but I actually found that fighting the system kept me focused and stopped me from tumbling into huge waves of anxiety.
Where are we 22 years later? We are still fighting for him and very involved in his life. However he is happily living semi-independently, in his own home with support.
I wish you all the best - it is a long hard road.

OP have you considered asking for an assessment from the Children with Disabilities service through your local council? Every child with a disability is entitled to assessment of their needs by social care - the outcomes can be really varied and I don’t know what will be on offer in your local area, but it’s something to consider.

I’d also push for an EHCP assessment to keep your children safely in education (for your own sanity as much as anything else!)

I know its hard but try not to worry about the future
You have to concentrate on the here and now
A few practical things have yoy looked at your local offer to see what's absolute regarding special needs groups in your area
It should be on your local council, s website
If nothing else meeting other families who are in a similar position can be helpful ime
Have they applied for an EHCP for when your sons stats school
And what type of school has bern suggested ?
Have you applied for DLA for the kids?
My son is severely autistic with severe learning disabilities
The early days were very hard
But we have various service s involved and im in a much better place than I was 15 years ago.

Thank you all so much. I’ve wanted to post here for so long but was frightened at the responses I might get. It is so reassuring to hear from people who understand.

I will have a word with nursery about the funding. I still get the impression they think he’s more trouble than he’s worth.

Am I able to apply for an EHCP myself? Could I also apply for my daughter? Are there any downsides to applying?

We dont get DLA, financially we’re okay so it doesn’t seem right somehow. I’d love support but I’m not sure money would help, although it would help to put some towards the private SLT.

@LittleRobins Well done for posting and reaching out. The early years are the toughest as you are coming to terms with everything and having to fight for what your children need.
You are the expert on your children and their best resource. It can be overwhelming listening to all the advice when what you also need is support and understanding.
You can request an EHCNA as a parent. There are template letters online. IPSEA is good as a PP has said.
I’d concentrate on your oldest child for paperwork for now. You will know exactly how to navigate things for your younger one.
Please consider DLA it’s not means tested and it can be more expensive bringing up children with additional needs for lots of reasons.
Try to look after yourself if you can. You can do this.

Definitely look into applying for DLA when you can. The form can look overwhelming but tackle it bit by bit and start gathering evidence, e.g medical letters, any reports from HV/portage, support plans nursery have in place etc.

Additional needs bring additional costs, e.g. DD is not yet toilet trained so we still buy nappies, wipes etc, her restricted diet means our groceries cost more, we pay for sensory integration therapy privately, speech and language therapy, sensory equipment etc. just a few examples. As you move through the EHCP process you may want to use DLA money for private reports or assessments if needed.

I also found that keeping my mind busy with getting support in place helped stop me spiralling about the future and helped channel my worries. Easier said than done, I know. You can definitely start the EHCP process yourself, there’s an EHCP support thread on the SEN board with lots of helpful posters. Link here - https://www.mumsnet.com/talk/special_educational_needs/5309128-ehcp-support-thread-no-5?page=39&reply=150499997.

It can all feel daunting so take things one step at a time and make a little plan about what you want to focus your energy on first.

Apply for dla. It isn't for you it's for them and even if you don't need it now you can save it for when they are older and do need help. Also dla gives you access to other things because it is a recognised measure of disability. So the level of care and mobility needs your child has is used aa a measure to help work out what support you might need.
Tbh you could use it to employ a mothers help right now and that might save your sanity.
I also agree that you should ask for a carers assessment as you might be able to get some respite. My son went to a Saturday playgroup for disabled kids once he got to 5 and it was so useful to have a break.

Request a meeting with the nursery. Follow up with an email so you have a paper trail. They should not be leaving DS in a leaking wet nappy. That isn’t acceptable.

Also request EHCNAs for both DC. You can do this yourself. As pp said, on their website, IPSEA has a model letter you can use.

Some LAs have specialist early years assessment places for those who need to go through or are going through the EHCP process. Check if your LA does.

Apply for DLA for both DC. The Cerebra guide is helpful when completing the form. If DC get DLA, the nursery can receive disability access funding. This is separate to early years inclusion funding.

Have you had social care assessments? A carer’s assessment for you and assessments via the children with disabilities team for DC. On their website, Contact has model letters you can use. There may not be anything suitable, but also look at your local short breaks offer.

Check if Home Start operate in your area.

Have you had a home OT assessment? That can look at making the house safer and better meet DC’s needs.

Oh gosh, everyone’s being sound and helpful. Thank you, I wish I’d posted sooner. I will look into DLA. The way you have all described it makes me feel much less guilty for applying. I’ve never applied for benefits for anything before so it feels like foreign territory to me!

So do I apply for a EHCNA before the EHCP or as well as? Sorry I’m still a little confused. And is it okay to do so before he’s officially diagnosed?

I don’t have direct experience and you’re getting great advice from others on how to support your children. What I’ve gleaned though is that you urgently need some time to yourself, not as a luxury but as an essential. You will gain strength and mental resilience from a break. How can you get one? Maybe chuck money at it and google respite care for autistic children. I don’t mean over night (unless you want to) but a few hours / days on a regular basis that you can look forward to.
Lean on family too. Best wishes.

There are additional expenses when bringing up a child with additional needs. In addition to all the practical stuff (we had to buy specialist clothing, deal with incontinence and so on). Going forward in order to give our son those similar experiences to other children it was usually at a greater cost e.g. learning to swim needed 1:1 rather than a group class and so on. Please apply.

EHCNA is requesting an assessment of needs for an EHCP.
An EHCP is based on needs not diagnosis.
Send for the DLA form.

I agree with others you should apply for DLA even if you dont feel you need it financially it opens doors. to services
If you are successful with the applications you can do whatever you want with the DLA save it for the future or spend it on specific. Things. As long as you are using it to benefit your children its fine .

One more tip. If you ring the number on the government website and request a dla form to be posted out, they date stamp it and then your claim is back dated to the date stamp so it doesn't matter if it takes you a while to fill the forms in.
www.gov.uk/government/publications/disability-living-allowance-for-children-claim-form

The EHCNA is the needs assessment you first request as part of the process of getting an EHCP. It is the EHCNA you request rather than requesting an EHCP. EHCPs are based on needs, not diagnosis. You don’t need to wait.

DLA is also based on needs rather than having a diagnosis. Definitely call. Although it is only backdated if you return the form by the date given - unless there is good reason for late returning in which case it also partly depends on whose desk it lands on.