to feel utterly trapped?

[Basikelly]

DH and I are both 32. We have a three year old DD who has significant global developmental delay (we feel there are more diagnoses to come). I won't go into too many details in case situations I mention are outing, but I feel totally trapped and that my life is over. I suspect that DH feels the same way. We don't talk about this elephant in the room, although the tension between us is very clearly a reaction to this.

Every day is dictated by DD and her needs, which are increasingly difficult. The joy of having a young child is altogether absent.

Friends who have DC the same age are forever taking them to lovely activities and events, such as seeing things at the local cinema, dancing classes, swimming - even just playing games together.

DD can do none of these things. She'll scream if there are loud noises, behave aggressively to other children, run away from activities - exhausting meltdowns and tantrums. Horrible for her, horrible for me, horrible for everyone around us. I can't even take her to the supermarket without chaos ensuing and leaving me feeling really frustrated and, frankly, resentful. It will only worsen as she grows too - thinking about having to meet her physical needs and also how her increasing strength with impact everything.

DH and I had very pleasant childhoods, filled with fun. I remember feeling very grown-up when my mother took me to see The Nutcracker when I was about five or six years old, for example. I had music lessons and loved to write stories. DH speaks in fondness of visiting his uncle's book shop every Saturday. He tells a lovely story about coming home with Fungus the Bogeyman and his mum enjoyed it more than he did.

I feel sad writing this because it's everything that we thought our child's life would be, but it never will (we planned on having two children, but we can't do that now). We're more facilitators of trying to stabilise her mood than anything else. Grandparents live hours away from us and we wouldn't impose looking after DD on them. They've tried babysitting on the odd occasion, but it's not worked out.

I wake up in the night with anxiety and greet each morning with a sense of dread. The hard thing is that this is 24/7 - it's not like a crappy job that you can go home from.

The worst aspect of all of this is that DD is very unhappy. Her default emotions are fear and frustration. Apart from sugary treat foods, I can honestly say that nothing seems to make her happy. Some things, such as one particular teddy, seem to offer her comfort, but it's not happiness.

I used to find comfort in DH and my cat, but DH is now emotionally as destroyed as me and I had to sadly re-home my elderly cat for his own safety.

I don't know what the AIBU is, or even why I'm posting this. Pointless really!

Agree totally. Apply NOWWWW!!!

The school CAN take children in advance of their EHCP being issued, visit it asap and see what other resources they recommend too.

I am so sorry you are feeling this way. I have a 16 year old daughter with Down's syndrome and I can understand some of the emotions you are feeling.
Through personal experience I highly recommend you contact a Functional Medicine doctor. There may be underlying causes for some of the behaviour that the NHS will not test for. One I can recommend is Brainstorm Health. I wish you all the best with your child, and hope that happier days are around the corner.

Awwww op she sounds likey 7 yr old ,,life just is setimes a existence and a constant round of risk assessment I found .
It does get easier tho when DX comes and you start to get special schools and other professionals giving advice and even the chance to meet a mix with parents who are facing the same challenges as you and your partner ,,it's lonely right now cos you have only just started on this journey but you and your family are not alone .
I know it's not what you dreamed off but you will learn to embrace the small wins,,it's very early days yet and your still grieving the life you thought your little one would have ,,she will have a different life but it can still be happy for you all

You only need ro find one other parent or set of parents with the same outlook as you and maybe that will help? Maybe different parents will appear at different meetings.

Sounds so tough. I have no advise but just wanted to say the above.

Search for local groups for children with disabilities or autism. There's a charity called Bee Unique covering Cumbria and Lancashire, autism diagnosis isn't needed. They have exclusive sessions in soft play areas, farms, swimming pools etc. I couldn't take my DS to places like this as he would get overstimulated and violent. I have to travel for the Bee Unique sessions but it is so worth it. Me and DH nearly cried at the first one, to see him just running around having fun instead if screaming and hurting other DC was so nice. Some children do still meltdown during the sessions, but being around other parents who understand makes it so much easier.
Try and figure out what DDs sensory needs are. If you manage them it can be life changing. Does she regulate swinging, being in a dark den, climbing? Is it lights, sounds or smells causing her to have meltdowns? It's not easy to figure out with a non verbal child, but maybe try and keep a diary and see what her triggers are and what makes her calmer.
It is hard and it is a grieving process. Your DD is still so young though, things can get better.

I’m sorry OP that it’s so tough. I don’t have anything helpful to add but I’m willing you on.

@LadyMacbethWasFierce I’m also sorry to hear of the loss of your daughter. Sending love across the internet to you. Xx

I'm so sorry OP - this sounds like a very difficult situation.

I agree with others though re school and EHCP - apply now for an EHCP. Push the council for a place in the setting while awaiting the EHCP - your daughter is legally entitled to a school place - don't let them fob you off!
Start shouting loudly now as it were - speak to the council/GP/health visitor/your local MP/the local paper- basically, anybody who will listen and support. Go and visit the special school as well and speak to them.

I think her getting a place in school provision, whatever that may look like, will make a huge difference to your wellbeing. Does the special school have a nursery provision?

OP this sounds awful and you have every right to feel grief, resentment, anger, dread, fear and everything else you are feeling.
Nothing much I can say other than your mental health is of paramount importance so anything you can do to assist that is worth doing.
Ps do you have anyone IRL who knows how you feel?

@LadyMacbethWasFierce so sorry for your loss.

Big hugs to you and your DH. And your DD too. So many layers to parenting a child with additional needs.

In terms of going to school -your daughter has an entitlement to an education tailored to her needs in the same way that a child without a disability has. This means that options for going to school or entering some kind education provision at the time when her peers would should be explored.

You can (and probably should) lead on an application for a needs assessment for an EHCP yourself -please don't wait for another agency to pick this up. Now is a good time.

This is a really tough road to travel alone. RL groups might feel a bit bleak -you're meeting parents who are perhaps a bit further along on the journey and, through exhaustion, have given up on maintaining pretence? You're getting the 'warts and all' version of their lives, which can feel intense. Online groups may be easier to engage with -you can dip in and out and digest advice and shared experience as and when you are ready.

Wishing you all the best, OP.

Oh, OP. I’m sorry. She is entitled to a school place. I sincerely hope you can find one. Would moving be a real option? I expect getting her into school would ease some of the burden and would absolutely give you a network/community. I used to teach in special Ed and the parents were so close with one another.

sending love ❤️

I imagine that you are indeed grieving, nothing about your life is how you expected.

Have you contacted your local SENDIASS? If not, please do so asap. They will support you through the assessment process. I really don't understand why this has taken so long when it is obvious that she has complex difficulties Somebody is dragging their feet.

Please don't despair, some children fare better in residential provision, which would give you a break. She might be one of those children who needs professional intervention.
I know adults who were very challenging to deal with as young children but with professional input are now pleasant adults even though they still have complex needs.
You don't have to give up on all your hopes and dreams, although it feels like it atm.
As PP suggested, check that you are receiving all the benefits that you and your daughter are entitled to.

oh my god @Basikelly I read this and HAD to respond. I am about to go out so will try and write a longer response later but just to say I have a 3.5 year old with a serious delay and there’s so much of this I could have written. I am not over it and never will be, but some things that have brought some light back to my life:

1. sertraline. i’m on 100mg a day. the constant, bone-shaking anxiety about the future is reduced to occasional worry

2. diagnosis. my son has a very rare genetic condition that means he is likely to always be intellectually like a child. it was a devastating diagnosis to receive; a true worst-case scenario. but the 2.5 years since receiving it have felt infinitely easier than the first year, where it was clear something was wrong but we didn’t know what.

3. childcare. he is in childcare five days a week now. he went at 14 months for 3 days a week and the first 6-8 months were absolute hell for him and us. he was miserable. constant meltdowns there and here. eventually he got used to it and now he enjoys it. i don’t feel guilty. weekends and evenings are the absolute maximum time we can handle him without spiralling. i don’t .

4. this will be controversial, but we had another baby a year ago. we only ever wanted one child. but within hours of having my son it was clear something was very wrong and i knew there and then the pain i was feeling could only be salved by experiencing the motherhood i had imagined. it has made our lives very much more difficult but it was the right decision and i believe we can still give both children a good life.

solidarity. it is awful

I’m so sorry you’re going through this and your feelings are totally valid.

I think it’s important that you and DH feel safe enough to speak openly to each other about this, as sometimes just venting can help.

3 year olds are hard work.
As she gets older, she will get easier, even if she has additional challenges compared to other children her age.

Lower your expectations too, as many parents find having kids but more challenging than what they realised.
My sisters toddler is an absolute angel but my sister started crying in ASDA because he was trying to grab everything and she just felt overwhelmed.

My friend has a child with the same condition and she has found joining FB groups really helpful just for that support and having people understand what you’re going through.

My heart breaks for you, your DH and your DD. You've all be dealt a terrible hand in life and it's not one that you can dodge or make easier. Totally fair that you feel short-changed - I would too. If it's currently possible for one of you to manage her alone for the weekend I'd suggest each of you having a weekend away each month to recharge and have a break. Especially as you don't know how long it will be possible for one person to manage her alone. Hugs.

Agree with others. Apply for an ehcp yourself. Ask for support through Sendiass. Your dd will be entitled to a school place. I take it she’s not in. Nursery setting? I think a break for you all would be good. Even without an ehcp some areas have high needs funding for preschoolers though this is dependent on area.

Heart goes out to you. I feel a bit on eggshells suggesting this but have you seen BBC's There She Goes. It was brilliant for giving myself a window into a different parenting world and the interface between my experience and yours.

I hope you find the whole series, this is the concluding special.

https://www.bbc.co.uk/iplayer/episodes/b0bp2zq4/there-she-goes

No advice but solidarity for everyone grieving.

OP, do you think part of the issue is her not being able to communicate her needs to you and others? Not being able to tell you when she is hungry, tired, sad etc? Have you tried PECS (picture exchange) or another way to help her communicate her needs/feelings? 💐

Has an EHCNA actually been requested? If not, do that yourself now using IPSEA’s model letter. If an EHCNA has already been requested, what week are you on? The EHCP process is governed by statutory timescales. These timescales aren’t optional despite what LAs think.

Does your area have specialist early years assessment places for DC who are going through or need to go through the EHCNA process? Some LAs do.

You need a home OT assessment ASAP. This will look at making the house safer and better meet DD’s needs.

Request social care assessments. A carer’s assessment for you and an assessment from the children with disabilities for DD. On their website, Contact has model letters you can use.

Also look at your local short breaks offer. What is available varies area to area so there may not be anything suitable, but it is worth looking.

See if Home Start can support you.

Are you receiving DLA for DD?

Why do you need to wait for the ehcp? Just enroll her in a mainstream and let the chaos commence, gives you good evidence too. She’s legally entitled to an education at the same time as everybody else, don’t let them con you out of this. If they can’t manage to sort their shit out in time for a special school, it’s not your problem.

The LA will drag this out for as long as possible. Enroll her in your local mainstream now, they have to accept her. Don’t let them fob you off, she is legally entitled to a full time education

You will need to make a fuss as your child should be able to start school when their peers do. I have noticed it's those that shout the loudest do get help the soonest.

There are a number of groups near me that do run specific Sen sessions. These are 'fun' groups doing sensory play and generally seem to be run by former or current teachers trying to make extra money so I think they would be understanding of your child's needs and while not quite the same as the activities you imagined taking them to, is an alternative that might be possible.

Of course you are grieving OP, this is a huge loss from the life you expected and the life that your friends have. It's deeply unfair, and made worse by our unfair society that does not provide adequate support for disabled children.

All your feelings about this are completely fair.

It might be worth trying some other carers groups, perhaps online, to find one which clicks with you. In awful and isolating situations, peer support and friendship from others who truly get it can be the most helpful thing.

You just needed to vent right? You are in a very stressful situation i really feel for you. I think you should deffo talk to your husband about this u will need your relationship to stay strong and to support each other for you to be able to function. Make plans to help each other - give each other respite etc. You are amazing for what you are doing already though!

Hi OP, I'm sorry things are so difficult. I have a SEND child with much lesser needs but I remember age 3 was definitely a low point. Regarding the council, fortunately there are posters on here like @ExistingonCoffee who know the law and procedures inside out and will help you pressure them to sort you out an appropriate school place. If grandparents are helpful but hands on babysitting isn't possible, could they help you with some of the paperwork?

Please try not to compare yourself to others. I've had to make different educational decisions for DD to our peer group and it is hard, but I made the right decision for her.

@LadyMacbethWasFierce I am so sorry for your loss

www.mumsnet.com/talk/special_educational_needs/5309128-ehcp-support-thread-no-5?utm_campaign=thread&utm_medium=app_share

The EHC needs assessment has a mandatory timescale and should be completed within 20 weeks.

If you submit the application now, it really should be done in time. Legally she is entitled to a full time education that meets her needs. Even if it isn't done by September, it will be done afterwards. You absolutely need to be able to look to the future and see a tiny something of light (that's not the train coming)

I remember feeling how you feel now, keep working, it keeps you from being utterly swallowed up by being your daughter's mother and its so easy to get swallowed up in.

I'd really like to tell you it gets easier, but the milestones your friends children reach are often still a gut punch, the gut punches do get softer.