Can't cope

[Namechange11112]

My ds is two and has a genetic syndrome.

He is none mobile and has no communication.

Looking after him wasn't too bad when he was a baby but now I just can't cope.

I've never come to terms with his disability. I still greive the child he should have been. I hate that we can't go anywhere or do anything. I see other mums out having fun with their kids enjoying their lives. I'm stuck at home with this child that's screaming and kicking for no real reason. He doesn't play, he just eat sleeps and screams, like a newborn, but he's a big strong loud two year old.

I'm starting to hate him, I feel like he's ruined my life, I had to give up work to care for him. I'm so lonely, I have no friends or freedom from him. No money or financial independence. I can go days without seeing another person. I want to put him into care but I'm not sure if that's even an option and I know my husband wouldn't allow it. But he has no idea what it's like as he works away.

I'm not sure how much longer I can go on. I don't want this life. It feels like the older he gets the worse this is going to get.

I'm so isolated, I'm thinking of stopping the two groups we go to as I can't cope with the way everyone looks at us and can't cope being the odd one out, sat with a toddler that's less able than their babies.

I was really optimistic about him before but I've lost all hope. I can't see him ever developing and feel like he will be like this forever. I don't know what to do, I cant go on like this. I feel like running away. But I have no job, no money and nowhere to go.

What can I do. I no know one can really tell me but I have no one to talk to and just wanted to get this out.

Portage told us the ehcp will be done once he's in a nursery. If we can start now that'll be better so I'll raise that with ss.

It's not that the nursery is at capacity. The school is at capacity so they have closed the pre school. So they have a nursery attached to the school that is empty and unused. I dont really understand. His portage worker said they're trying to sort it out as they have loads of parents that want to send their kids there.

I thought it was weird they wanted to contact the doctor. I assumed they would want to assess him and us themselves. It's pretty obvious he's disabled when you meet him. I'll chase it up again Monday.

Thanks again for your help.

There will be another sn nursery attached to another as or a standalone one, the LA will know they’ll just hope you don’t ask.
Secondly, google around you’ll find it and even if it’s out of your nori right but a driveable for you don’t rule it out. If your LA provision is full they are duty bound to find you another one. Now.

Out of your area*

Social services need to start what is called a child in need report. That’s separate to an EHCP.
It’s the LA that need to start the EHCP report.
Parent partnership will help with an EHCP and finding a nursery.
When you get your LA on the phone ask if there’s anything else you need to apply for for support.

And that child in need report social services prepares will detail respite or money for respite and they’ll know of agencies that look after children or carers that can come to your house to give you a break. And they provide the funds for you to do this.
These are 2 separate reports.

The social services must come Out and prepare a child in need report and specifically ask them for this and explain you’re close to thinking about care hence the reason you need more support.

You say you go to a couple of groups but don't like the 'looks' - check your Local Offer / ask Portage whether there are any SN or disability groups in your local area that you and your child can attend. It's very isolating when you think you're the only parent having to cope in this way, and it's quite eye-opening to see other parents and their disabled children.

Similarly, are you a FB user and have you considered FB groups? There are various based around special needs, DLA, genetic issues etc.

I'm intrigued to know the genetic condition, my friend has a daughter with a very rare condition for which there is only a handful in the UK and more in the US, I know she struggled massively when her daughter was small but now she's in her 20s and quite charming!

Ask portage to start the ehcp process- they can do this which will either give support for a mainstream nursery place, or help get you a place in a special school. The one nearest you may be full but there will be others. Ask about a SS self referral - they have to do this if a parent requests. Can your physio /OT help you access anything- please tell them how hard it is and see if they can make any suggestions. Good luck, I know this is such a hard situation Do you have any family support?

This nursery may be able to help, even if it’s not an option for you re distance etc, this nursery has been around for years and they will certainly know of local nursery’s and be able to give you guidance as they specialise in the educational setting from 2-5.

victoriapark.w-berks.sch.uk/aboutus/

You may have this already but if not ask your paediatrician to put in writing your sons diagnosis and also that a sn nursery would be the most suitable. You can tell your pead it’s because you’ve asked mainstream
Nurseries who have all refused.

This all adds weight and takes you a phone call but it gives you a document you can wave to the LA and social services to get a nursery place quickly, even if it is out of area. You cannot wait for space or a nursery to just pop up. And not should you have to.

As a side note I went with a mainstream nursery but this is because of my sons diagnosis of classic autism at 2.5.
Had I known a sn nursery would be best- which I know now-or that they even existed, I would go back in time and choose that option.
My sons nursery was ok, but no real focus on communication or experience in handling a child with additional needs. So it’s a blessing I feel that the nuseries are saying no, it’s no good to you to be on the other end of the phone having to rush back and forth when they can’t cope or if your sons unhappy. Like I did.
Go with a sn nurseryand shout from the rooftops to make it happen for your own sanity also.

Ask anything on these boards and let us help you even if it’s just to throw different suggestions.
We’ve all been there. Tell us what happened. And be kind to yourself.

We're getting a bit of conflicting info now. Portage told us the sn nursery attached to the sn school is not in use. But they an school got back to us and said we need a echp to send him there. So we're a bit confused now.

The plan is to just get him in anywhere for now while we get the echp sorted then find a SN nursery to send him too.

I also don't think a mainstream nursery will be suitable for him. His needs are very complex and I don't think he will get the help and support he needs in mainstream.

There is a SN group we go too but that was stopped over Xmas. Its due to start again soon. I think there are other more informal groups for sn kids in the area but I struggle because he doesn't really do anything I feel a bit stupid taking him to "free play" type groups.

Certainly in my area children need an EHCP to access a special school nursery. Once he has this your case will be stronger. Plus, should there only be mainstream nursery available, this would find some support for him. Is your portage worker starting this process?

home-startwestberks.org.uk Contact these folks for some support for you. They can come to your house and play with your son, or come to playgroup with you. Basically whatever you need to feel less isolated.
Highly recommend them :-)

So contacted la to get echp sorted. They basically told us it won't get done unless we have him in a nursery.

So we can't send him to sn nursery without the certificate but we can't get the certificate without sending him to nursery.

I went to see a private day nursery and was told I can't use my free funded hours alone. Was told all private nursery's will be the same.

I then got a call back saying she was wrong and they will take him just on the funded hours.

I'm so exhausted by this whole process. It shouldn't be this difficult.

No it shouldn’t. Have you contacted any sn nursery’s even if they are out of LA? You shouldn’t have to compromise where you send your child just because there isn’t a sn nursery in your LA.
I sent my son to private nursery also and it was good but I now see that sn nursery would’ve started alternative communication pathways for him and started earlier on trying to give him the means to communicate and just would’ve had lots of experience.
I’m sorry, I don’t want to add to your headache as I know getting a nursery place is the most important right now. So go with it but don’t stop looking, just in case you find somewhere perfect. He’s only 2, he has 3 years before school.
Big whoop that you’ve found somewhere so when does your son start?

He can start from April in a mainstream. Which will at least give me a break.

I know of a SN pre school out of the county that's not that far. It might be worth trying to get approval to send him there.

Go and have a look at it if you can- and you will definitely get that choice if it’s out of area and the only real alternative. It’s good to see an alternative. They might be able to take your son straight away. I’ve never known why nursery’s are saying wait.
Why April? Can they not have your son earlier?? You’ve got the hours now it seems a shame to not be able to use them now.

The funding doesn't kick in until the first term after his 2 birthday. Another pointless rule the council have created.

I am so sorry you are finding it so hard to get the support you need. We have 4 county special schools that have 'stay and play' sessions for little ones and then take them from 2 years 9 months and the EHCP is written whilst there. It is awful that your county does not make it easy for parents to find the right provision. Unfortunately it is the parents who are having to work extra hard to care for their children have to work even harder to get the right support. On another thread a pp said you have to be the squeaky wheel.