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.

Do you get much support? Are there any charities linked to his condition? Look for parent carer groups locally

It’s not easy. I found that counselling helped me massively with the grieving side of things. It helped me to accept what was rather than what “should have been”

Make sure you get time for yourself even if it’s just going for a walk or coffee

He has lots of support from various therapist but I don't have any. No one else can look after him so it's all down to me.

There is a fb group for kids with his condition but I find it depressing. Plus there is only a handful of diagnosed cases in the UK. Most the parents on the group are in USA.

I walk the dog every day. But other than that there is not much we can do. I go shopping and spend money that I don't have because we can't do anything fun.

I feel like I have been forced to live my own personal hell, it's like I'm being punished for somthing. I'm just not the sort of person that can be a carer.

Does your son have a social worker who could help organise respite to give you a break? It does sound very difficult for you.

Call social services and refer f, there’s a different dept that deals with parents who have a child in need and they have access to so many options that will help- financial too.
Have you applied for DLA and carers?
If your child goes to a sn nursery you’ll meet mum’s there? You’ll certainly be allowed to access this option. There’s hope. You have to put all these things in place and I promise you’ll get respite and feel back in control of your life.
This age was the worse for me too, trapped no where to go and no respite. I couldn’t have coped if I didn’t make the necessary calls to social services and start the ball rolling for help. Do it. It won’t be like this forever I promise you.

Keep talking on here, don’t suffer alone. A lot of us have been there.

I agree with Lesley25. I'm sure it will get easier but you definitely need some support. You need to contact social services. Please let us know how you get on.

We have been made aware to social services but they've never contacted us or had any involvement.

He has been approved for 15 funded hours nursery, but I can't find one and no one will recommend anywhere or help me find somewhere.

I think I'll speak to dh and then contact social services. I can't go on like this. I have so much anger and resentment towards him.

He just screams and squarks all day. I can't relax. I just need a brake. I wish I could just shut myself away from him.

I do get dla and carers but it's only really just enough to get by. I'd love to be able to work just to see other people, get out the house and away from him and earn a bit extra cash. But I don't see that being possible for a long time if ever.

A Social Worker should help you access services and find a nursery etc. I understand it must be very frustrating but there is help out there so give SS a ring.

If you know of special schools from 5 years upwards, alot have a nursery element attached. Google Special schools around your county and definitely ring social services even to tell them you’re thinking you can’t cope any longer, action will be taken and don’t for one minute think they just come in and remove children, the child in need dept doesn’t work like that.

Can you imagine how different your day to day life will be if you do find a special school with a nursery attached who will take your son for a morning 9-12 5 x a week. It will change your life and give you a break.
I too had a dh who worked away so you have to do this yourself. You are no good to anyone if you allow your mental health to deteriorate and resentment build. I know I’ve been there.
So, please call social services, explain how you are at the end. They will come out, they will come with so much resources and info to help. First things first, google your area for the sen provision for schools and go from there by calling them to see if they have a nursery attached.
When things start movingand changing you will feel the relief.
I remember in the early days some posters googled the area for me when I didnt have a clue what to look for so pm me or tell me your local authority. I’ll help you google and find some numbers who might be able to help. You’re in receipt of carers so they’ll be like minded people at those get together. Once you’ve sorted a nursery provision out - that can happen quickly, you don’t have to wait till sept or the beginning of the month to start.
Then you can focus on meeting like minded people in the same/ similar situation.

Thank you. I'm in Berkshire. I'll have a look for sn schools.

I didn't even think to look at sn schools. No one has given me any advice at all I've just been left to do it myself and feel like I don't even know where to start. They just keep saying it's up to me to decide where to send him. They wouldn't even tell me how to apply for funding I had to work it all out for myself.

I know things will be better once I get him in a nursery but it seems like there are so many hurdles to cross to get him there and I've just sort of given up.

Yes, agree with Lesley25.

I just want to send you a huge hug. Pls keep in touch with everyone on here x

Yes, I can imagine, you’re drained enough as it is, without having to cross all those hurdles. It’ll be worth it though and good for all of you.

Huge hugs

Are you still in touch with your health visitor at all? Mine was based at the gp surgery and supported us until ds wa five or so. If there is one they might be able to signpost you too local services.

You really do need a break and things will feel more manageable when your ds is in nursery and then school.

I found it very hard when looking for special schools. Professionals don’t seem to be allowed to give an opinion at all but if I were you I would ask them all where there are Sn nurseries in the area

So sorry, I know it’s hard but it will get easier

The hv is more than useless. Every question I've ever asked she has either not known or told me the wrong information.
She thinks other people involved should help me like his pead and portage but they only deal with their area.

I've googled and found a SN school nearby. I'll give them a call tomorrow and see if they have a nursery/pre school.

Hello OP, it can be hugely isolating having a child with special needs. I really feel for you as you sound so low.

Please go to your GP and tell them how you feel and that you're exhausted. Ask to be signposted to support, and to a service locally that can advocate for you and your son.

Sending a hug from me too.

OP, look at your local council website and contact the social work team that deal with children with disabilities. Tell them you need a Carer's assessment.
They may be able to arrange some regular respite for you, and also support you in the future.

Hi OP,

So sorry to hear you are having such a tough time.

It sounds like you are so tired and down that you ‘can’t see the wood for the trees’ please do speak to your GP, LO’s paediatrician, LO’s SW about how you are feeling. Asking for help is a sign of huge strength and good parenting and you cannot keep going how you are at the moment.

I really think you need respite, there are specialist foster carers that provide respite for children with all types of additional needs. I think nursery would certainly be a positive step but something like a weekend a month to yourself to rest, recuperate and actually have some you time would be invaluable. Being exhausted can make you feel really low and wobbly at the best of times.

I would also have a look to see if there are any groups for children with additional needs locally. Then you could get some social interaction with parents who are going through the same or similar to you everyday.

You can ask for your child to be accommodated under section 20 of the children’s act. This is where you share parental responsibility with the local authority but your LO lives with specialist foster carers. There is absolutely no shame in this, parents make this decision because they feel it is in the best interests of their child. I don’t think now is the time to think about this though. You are too tired and worn down and understandably desperate for a break from caring. I think life needs to improve first!

I really hope you get some support and rest soon.

I’m sorry your health visitor is rubbish :( Tbh in my experience the best sources of information in a local area are other parents but it takes a while to find them.

contact.org.uk/advice-and-support/parent-support-groups/

There’s a branch of Contact near me and they are fab. When you have the energy you could see if there is one near you? and hugs

Are any of the branches of this charity near you? They may be able to help or offer nursery places or even just general advice. www.dingley.org.uk/

I’m not sure where in Berkshire you are but every area should have a ‘local offer’ page online which should give a list of services for babies, children and young people aged 0-25 with disabilities or SEN. Eg: here is the local offer for West Berkshire but if that’s not your area you can google yours.

I definitely recommend you try and push for a social worker to support you as they should be able to put you in touch with local services and also look at support through respite or finding suitable carers so that you can have a break.

OK so called social services. They are going to contact his doctor to get some info on us and then get back to us. So I guess that gets the ball rolling. They also put us in contact with quality and development or somthing like that who are going to get back to us with a list of nursery's they know are experienced with an kids.

The only sn school locally has a pre-school but they're not using it as they are full capacity for older kids. So that's a no go which is a shame.

I'm feeling more positive today. He had portage this morning and was actually playing and engaging which was nice to see.

Hopefully things will get better when he is in nursery. I think we both just need to get out the house more.

Thank you everyone for your help and support. I'm going to look up those charities later as well.

Call back the social services for n Monday and see where they’re at. They don’t need to check anything with your docs, and even if they did it's wasting your time. Your son needs a nursery and you have 15 hours per week you want to use. They HAVE to find you a sn nursery. Also google parent partnership Berkshire, get on the phone tot hen and they will also have a list of an nursery’s and will come with you and arrange for you to view them, tell them it’s urgent.
It’s appaling you’re having to wait. Also your local authority need to start the EHCP ball rolling so google local authority Berkshire and tell them with your diagnosis your child will always need this support in school and nursery sontou want to start it now. Quite frankly, you’ve been excluded out of nurseries and that in itself Is discrimination.
I’m going to google also and see if I can find anything that may help.
Cmon op we can change how you feel about this situation.

I didnt realise there are quite a few embarrassing of Berkshire, however, west Berkshire has a whole set up. If this isn’t your area it doesn’t matter, call them explain where you are and they’ll give you a number to contact for your area.
info.westberks.gov.uk/article/30001
Also ask about the following:
Who do I contact for an EHCP- I presume I need an educational psychologist within the local authority to carry out the necessary assessments at nursery and home?
Social services - tell them you’re on the edge. You need respite. You need help
Parent prtnershop - ask if one exists in your area who can arrange and call up sn nurseries so you can view them together. Mine wasn’t great but they did some of the leg work.
Finally the fact a sn nursery is full so not your problem and gently explain that. They have to find your son space and you have the right to choose where that is. How they staff that and fund that is the LAs problem not yours.
Parent groups- honestly, you’ll feel inf your tribe in the sn nursery that you choose to send your son.
Carer groups- this one will be somewhere you may venture alone once your sons is in nursery but don’t dismiss how much a listening ear will help.
Charities- access Barnardos and the local authority will have groups out there for children and parents. Die tonyour sons age they will probably require you to be present but again you get to meet like minded people and it gets you out together.

Apologies I rushed this and didnt spell
Check but I didn’t mean embarrassing I meant areas