Coming to terms with child’s disabilities

[Leza1]

Our beautiful daughter is 20 months old and she has a rare but severe neurological condition. We received the diagnosis when she was 11 months old and as is often the case, the range of development children reach with the genetic mutation is huge but the doctors always suspected that she would be on the severe end. As time has gone by, her health has deteriorated already and she is now in pain a lot of the time. Her epilepsy is still not controlled and never will be. She can barely hold her head up, can’t use her hands and doesn’t notice if someone walks into a room. On good days she smiles and engages with you. I cant put into words how proud I am of her or how much I love her. She is frankly my world. But we have been in a ‘bubble’ with covid and now that we are starting to go out onto the world again, we are really realising how bleak her life is and we just can’t stop comparing our lives to everybody else around us. The world is filled with happy, healthy toddlers running around and getting so much joy out of life. I thought I had come to terms with her diagnosis but I really haven’t. I’m now starting to grieve the life she will never have and I am 💔
Does it get easier? Do children who are this poorly find their footing health wise and have some quality of life? Will our lives get easier?
Any advice would be so much appreciated.

Sorry OP that your going through a tough time. It must be so difficult coming to terms with having a child who is a disability. It certainly did for me. I came to a point that I can only control what I can control. I spent many years looking at other peoples "healthy" children rather than enjoying the ones I have. I also realised that most of the time life doesn't go to plan. I give an example, there was a time that one of my DC's needed to do some testing at the hospital, we met many children who all looked healthy- and I assumed they were there to visit family members, have blood work done, but when speaking to these parents, they will tell me that one child
Is having treatment for cancer, one has been in an accident, one has diabetes, kidney problems. From then on, my mind set changed.

What help me focus on my children, specially the eldest, was to do therapies an enjoy them. I realised that having a disability is not static (for most children) they improve with therapy. I would concentrate on finding private therapies for your child, look into Oxygen therapy, private speech and language therapy, private physio, private occupational therapy. These therapies will be key to her development- if will also give you a chance to meet other families and realise that your not alone. Regarding the Epilepsy, she may be too young, but have a read of the ketogenic diet. Keep going is my mantra and the times where you don't want, take a pause, look after yourself, have a whinge, have a cry and then get back up and keep going again.

Do you mind stating what disability she has been diagnosed with?

Thanks so much @secular39. Her condition doesn’t have a name, it’s too rare. All we know is the genetic mutation causes severe/profound learning difficulties, physical disabilities and uncontrollable epilepsy. She has had lots of therapies over the past year and made no progress. She can’t hold her head up, use her hands, roll over, sit, fix and follow etc. She did make progress earlier in the year but then got poorly again and deteriorated.
She has just come off the ketone diet. It was incredible for her seizures but unfortunately she couldn’t tolerate the feed. It made her so poorly and she’s still recovering from it.
Her outlook is so bleak and it is heartbreaking.

There’s this idea I came across years ago that the way people with PMLD (profound and multiple learning disorders - to note am NOT saying this describes your child) experience the world is very different from the way that most of us do - but it isn’t less.

It may be a sensory experience more than a narrative experience - instead of building stories about the world and learning about it they might feel/see/hear it - and there may get just as much joy, beauty and value from that.

I hope this doesn’t come across as me trying to glibly underplay how tough a card you’ve all been dealt.

DD has complex learning disabilities and severe epilepsy, but no physical disabilities as yet. Her condition causes progressive degeneration in cognition and behaviour, and she could end up in a wheelchair - she knows what she has lost.

IMO, it takes years to deal with the emotions that come with having a child with complex conditions. Look after yourself and be kind to yourself - if you feel you can't take on any more at times, say so.
While there is a need to plan ahead in the back of your mind, like researching schools, learning about the drugs, therapies, etc; on the other hand, take life one day at a time. Don't spend time thinking negatively "What if...." None of us has a crystal ball and its a waste of energy.

IMO, it is important for you and DD to try to do something everyday that you enjoy.

Having spent time as a parent in three specialist schools/college/centre for children, young adults and older adults with severe epilepsy and/or other neurological disorders, most have severe learning disabilities and some may have physical disabilities too; that I have seen the other pupils/residents do get enjoyment from things in life.

DD is an adult now and has 1:1 care all her waking hours, so gets to choose to do what she wants. She needs support with most of these activities, but she enjoys films, music, colouring, cooking, baking, playing football, going for a walk, nice food, holidays....Pre-Covid, there seemed to be trips out every day - to a football match, a pantomime, a theme park, the cinema, lunch in a pub, a nightclub (for LDs).....

If one of the other young women on her house makes cakes, they are encouraged to share them - that is always a treat for her, just having a chocolate cake!

When she is in pain (an injury from falling during a seizure or a post seizure headache), I always make sure she has the doses of painkillers she is allowed, on time.

Thank you both so much.

@Intercity225 thank you for sharing your own experiences. It is rare you see posts from parents of adult children with so many additional needs. Do you pay privately for the home your daughter is in?

We are craving the family life we thought we would have and slowly realising it will never happen. The injustice of it all is like a punch in the stomach and every single day is filled with reminders of what she should be experiencing, what we should all be experiencing. I hope I don’t sound like I am feeling sorry for myself. I just can’t believe how things are turning out. How can this be happening to our perfect little girl?!
💔💔

Do you pay privately for the home your daughter is in?

Goodness me, no!

Have you heard of NHS Continuing Health Care Funding (CHC Funding)? It is for people, whose needs for care stem from a primary medical condition.

So, for instance DD has a congenital brain abnormality, causing initially the complex learning difficulties and later, the epilepsy. She needs to be under adult supervision 24/7 - as while she can go to the toilet, get in the bath, eat her dinner, etc, she can have a seizure at any time. Therefore the epilepsy is the primary medical condition, and the needs for care arise from that.

I asked for her, as an adult to be assessed for CHC funding. There is a checklist, with various headings like cognition, communication, skin care, breathing, etc including seizures. Anybody who has uncontrolled epilepsy reaches the priority level of seizures, and this entitles them to CHC funding. Other people might for instance be severe in cognition, but mild in communication - they have to achieve several severe levels or whatever to reach the criteria.

NHS care is free at the point of access, and once someone is entitled to CHC funding, the CCG has to meet all their needs arising from the condition - say incontinence pads for incontinence during seizures. (You can get incontinence pads anyway from the NHS, but they tend to be rationed to say 2 a day - actually, with CHC funding, the rationing won't apply, they should get whatever they need).

We could have had carers at home, to help out with DD 24/7; but that does not work for us or DD. We found the care home, a specialist centre, where she is and the CCG funds it.

However, children with complex medical conditions can get NHS CHC funding for children. There should be something like The NHS Framework for CHC funding for Children on Google. Have a look at it, and the criteria for getting it. I would have thought you can get for DD, although I am not sure what age it goes from. Social workers might tell you "Oh, you won't get that!" Don't take any notice of them - they do not, ime actually understand the law around CHC funding.

If you haven't applied already, try applying for DLA care - its difficult to get mobility for a child under 2, as they are usually in a buggy anyway. Look at the Cerebra Guide on DLA, as its crucial to get the wording right on the form - I always put in every box "See attached" and answer the question in a Word document, with DD's name and NI number at the top of every page. Then you can copy and paste the same stuff in answer to most of the questions, because the questions are essentially very repetitive. If she gets that, then you can apply for Carers Allowance.

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachmentdata/file/499611/childrennscontinuinggcareFee_16.pdf

Oh no, I see for children there is no priority level for seizures - but even so, your DD's needs should be looked at holistically to consider if she meets the criteria or not.

@Intercity225 this is so, so helpful. Thank you.

We are craving the family life we thought we would have and slowly realising it will never happen. The injustice of it all is like a punch in the stomach and every single day is filled with reminders of what she should be experiencing, what we should all be experiencing. I hope I don’t sound like I am feeling sorry for myself. I just can’t believe how things are turning out. How can this be happening to our perfect little girl?

It's probably hard for you to get the time to yourself, while looking after a 20 month old; but maybe when she is at school, get counselling. There is no magic pill metaphorically they can give you, to come to terms with it; but just being able to talk to someone every week about the grief and stress you have suffered, is a big help.