How do you deal with your disabled children?

[Hogi]

Hi all,

Apologies for it being in AIBU but SN children is pretty quiet these days. I have joined fb groups but I like how anonymous MN is and how supportive it can be at times.

I'm just really struggling at the moment. I am going to be very raw and honest so please consider this if you feel you need to comment negatively.

In March my little boy was diagnosed with a rare (but most common) genetic chromosome disorder. It causes developmental delays, mild intellectual disability and has traits of autism (we believe he's on the spectrum as well so that's also being looked into).

My son is two years old. He's the size of a four year old. He cannot walk, he's non verbal and has limited understanding. I think he's official diagnosis at the moment is his genetic condition, GDD, low muscle tone and hypermobility.

Obviously that was only a couple of months ago and it doesn't feel as bad as it did then but he's been referred to occupational health, physiotherapy, speech and language, the genetics team, on the ASD pathway and he has a neuro and general ped.

We feel very much in the thick of it but coping.

But now we're in hospital with suspected seizures and awaiting an EEG and MRI scan.

It's just too much for a two year old. I don't know I just feel really down and don't know what to do. I was meant to start a job in June but with all of these appointments and my sons needs - it's very unlikely I can and I'll have to contact them to let them know.

I will of course do anything for my son, I will be strong for him and make sure he has everything he could ever possibly need but I just need some support and someone to tell me it'll be okay

Hi Op,

Your little boy sounds like my DD who is 4. Rare genetic disorder - chromosomal deletion - non verbal ASD, starting to present with absence seizures.

Its not an easy journey, is it? It seems the older she gets, the ''worse'' my daughter becomes in terms of severity and yet in other ways - she's communicating her needs through flashcards, she IS making progress.

Its simply baby steps.

I cannot stress enough how important it is to take care of yourself. Its gotten to the point that I could break at any point were it not for the day solo hiking in the Peaks I've been doing in the past couple weeks or immediately handing her to her father for an hour when he returns home from work.

I cannot work also, because we are waiting for a specialist school place for her - we're in the consultation period. I try to take regular breaks for a ''breather'' during the day. Some days this just doesn't happen. Those are the bad days, where I often end up yelling at people. Its hard not to feel guity.

Do you have a partner/ hands on partner to help you? The support network you have will make ALL the difference.

Have you thought about reaching out to the disabled childrens social workers. They have respite funds.

Hi @SpudleyLass,

Oh I'm sorry. It is difficult isn't it? Sometimes I feel we make one step forward and then four back.

I'm very lucky I have a very supportive DH and some family. My mums autistic so I also have some care responsibilities for her. I also have a six month old daughter. We didn't know about my son's difficulties when I got pregnant with her and I feel so guilty. I haven't actually seen her in 3 days due to us being in hospital. I miss her so much but my son needs me.

I feel constantly on edge so maybe like you say I need to find something like you have but I don't know what. I just feel like a zombie at the moment and honestly my life feels like some kind of nightmare.

I love my son with all of my heart but I just wish he was healthy and normal. I feel like everything I dreamt when I was pregnant has gone out of the window and I actually feel like I'm grieving for his future which is absolutely ridiculous because he hasn't passed away (and I feel like an awful person for feeling this way). I just feel sometimes like this wasn't how it was suppose to be but that's the cards we've been dealt isn't it so we have to do our very best for our children as that's what they deserve but it's so hard.

Hey my daughter has epilepsy and we struggle with many of the things you have said. There’s a great fb group called parents of children with epilepsy uk. Your son may not have epilepsy but there’s lots of us with similar issues dealing with seizures in there. Xx

Hi,
I'm sorry - this sounds so hard for you. You sound like the most loving mum. I hope your son's health is stabilised quickly and he gets home soon.

I just wanted to say make sure you claim DLA if you are not already (the care component) and when your child turns 3 you will be able to apply for the higher rate of mobility I believe.

This advice is just to help slightly reduce the financial pressure on you so you can save more energy for everything else. If you are eligible for universal credit top ups I believe if you receive DLA they add a care component to it. Make sure you claim what you and your son are entitled to so that if you cannot work, or can only work a limited amount, this can help a little.

I work on different days to my partner so that we dovetail so one of us is always available for childcare. Not the best for family time though. Being honest I think it will be hard for you and your partner to work at the same time relying on childcare. I'm sure some people do it though and would love to hear positive replies on how people manage too.

If you can manage your family finances with you or your partner not working or working at different times it will make life a lot easier for you. Try to make sure there is some time you are both at home together though of course.

Grieving is completely normal, OP. It is not ridiculous at all. Please let yourself feel however your feeling. Any child with any disability comes with anger, grief, depression. This is a huge range of deep emotions and feelings, and if you are going to cope and keep coping, let it all out here (if that helps) as you find the new normal for your family.

All the very best, OP, and hopefully someone will be among soon who can offer you some better advice than I.

Talk to other parents, ask for help and take help when it’s offered.

don’t feel you have always got to be strong, it’s fine to struggle. I think realising i can’t do it all was the key thing for me, I have had significant councelling to help my own mental health to get me in the best place possible. As cheesy as it is the analogy of needing to put your own life jacket on before you can help others is stop on.

You're, not your. Sorry.

For me I felt more in control and able to manage if I knew and learned as much as I could on my dc’s conditions, medications and interventions.

I think when you have a child with a disability it can feel like a lot of the decisions, control and choices are removed from you. Arming myself with as much knowledge as I could, I feel, helped me stand my place as a parent (if that makes sense).

You are grieving for the future you expected him to have. Be kind to yourself all those thoughts are normal. My DD is 19 and has a rare genetic condition. I found the early years the most difficult but you do gradually get into a routine and it does get a bit better (you learn to cope). I have spent years feeling angry and it is only recently that I have come to terms with everything and been able to take more care of myself. Do all the practical things - have you applied for DLA? Have you asked for a carers assessment from social services? It took me 16 years to realise that SS could actually be useful to us. We now have a fabulous social worker (we have also had some dreadful ones ) who is a real help to the whole family. Facebook groups are good - just be careful around 'parent groups' where people post to vent their frustrations - these less so - can make you feel really low.

My son has a genetic condition which affects his health, future & life expectancy. Although his issues are nowhere near as much as your son’s, he was very ill directly after birth & we spent his first three months in hospital.

I struggled mentally as you can imagine, I read a book about “perpetual grief” which is that you are grieving the child that you “expected” whilst managing the difficulties caused by your child’s condition(s) & worrying about his future which is the big unknown.

It is incredibly understandable to be grieving, struggling with all the medical stuff, worrying about stuff you don’t even know yet & feeling that all of this is incredibly unfair when surrounded by babies & children who are perfectly healthy.

All I can say is, things will become more manageable when you have more experience- of dealing with hospitals, diagnoses, medications etc. It’s not easy & you need to go easy on yourself & get support from wherever you can find it & whenever you need it.

Its completely normal to feel that way @Hogi, please don't beat yourself up.

As much as your son is going through something, well actually so are you two, his parents. And you have a LOT on your plate, even with the close support network. You're caring for at least two others whilst in hospital, worried for your son.

You'd have to be a robot to not be feeling all these things.

My boys are 8 years old. One is on the pathway to a diagnosis of autism and ADHD, the other was diagnosed with autism and learning disabilities when he was 2. He is still non verbal and doubly incontinent. He has a few genetic variations as well. (I share 2 of them, but they are benign in me).
I felt much like you did just after diagnosis.
I can't really say it gets easier, but I did reach the point where I realised it is what it is, and we've carved out a life for us all that works. It may not be the life I thought we'd have, and it's not a conventional one, but we're happy.

Acceptance of the way things are is incredibly hard and there are still times when I want to howl in despair at the injustice of it all. My son's health needs I can cope with. It's when society fails him that I lose it. Schools, doctors ... I've had so many battles. But I am the only advocate he's got and I've got the hide of a rhino now.
Get every bit of help you're entitled to - blue badge, DLA, carers allowance, short breaks - anything and everything that makes life just a little bit easier.
I was an idiot initially and refused it all - a kind of denial I suppose.
Good luck at the hospital. My DS went through seizure assessments - it was a particularly stressful time.