Here we go again ..

[MammaKel]

This is totally a moan and a groan, but I have no one else to talk to ..

DS (almost 4) has additional needs. He was diagnosed with a rare genetic condition at 2 as well as GDD and hypermobility, and then at 3, he was diagnosed with Autism. He can't walk, speak properly, and is in nappies. He's a lovely happy little boy but requires a lot of care obviously - we have a ehcp for him, professionals and the relative benefits in place for him so at the moment it's pretty settled and we're just getting on with it and doing our best for him..

When he was 22 months old, I gave birth to his sister, this was before we knew of his additional needs (although they were suspicions but not to the extent that it is).

DD was extremely delayed, she couldn't do anything until she was one years old (no sitting up, crawling, babbling etc) she was literally a little potato so we got the relevant professionals involved and slowly she did these things, except she had a regression with her talking but can walk (falls over a lot) so we got her tested for the genetic condition as we found out it came from DH, she doesn't have it so I kind of pushed it to the back of my mind and I think was in denial about her behaviours.

Although at my sons diagnosis appointment for autism the specialist health visitor mentioned my daughter (as she saw her with my son at the home visit) and told me to make a referral as soon as she turned 2 and that she'd probably be seeing me again ..

She turned 2 at the end of October and we had a health visitor out this week for the 2 year check, we filled out the questionnaire and she observed her and mentioned a lot of traits she saw and that she was delayed in 3 or more areas so she'd referred us to speech and language, portage, community paediatric and back to physiotherapy. She has also called our nursery and asked that the specialist health visitor get involved.

I just don't want to do this again. It's hard and its shit and when I try and talk to my family about it all they can say is well at least you will be able to get more money for her (WTF!) so it's useless really and really pisses me off because before DS needs became as bad as they are I was training to be a nurse and I would much prefer a career and two children that don't need as much help rather than being on benefits (DH does work though, I'm the main carer).

I just can't help but think about the future of 2 autistic DC - they may never live independently. Life just seems like it's going to be harder for them, and it's just not fair.

I don't know why I'm posting really, just hoping someone has been through similar and can give me a reality check.

I have no experience of what you’re going through but there is no right or wrong way to feel about this. You can feel despondent and frustrated and upset for yourself and your children while still loving them with all your heart.

This isn’t the life you planned and you to give yourself some grace while adjust your expectations and dreams for the future.

Thank you, I know you're right.

I think I'm just upset we have to go through it again.

There are days/phases when it absolutely sucks and it’s really shit!
I have two disabled children too (autistic and several other diagnoses each as well) they are amazing kids but I am having a terrible time with my eldest at the moment which is quite frankly slowly killing me and we’re at an absolute loss at what to do right now. I am so hoping this current nightmare phase ends soon.

I think the what makes it so difficult is the complete lack of support from anyone. It is myself and DH and that’s it. Dh has a huge family but we are completely excluded from it so are on our own.

Like your family, dh works and I’m the carer. Well I’ve always called myself a SAHM but I’m not actually, I’m a full time carer for two disabled children that’s what I actually am. I am tired of people asking me what it’s like to be ‘a lady of leisure’ or the first thing they ask me being ‘oh how much money do you get for them?’ It’s absolutely outrageous. Do not discuss your financial situation with people, all it seems to bring is bitterness that you receive some financial help towards their treatment and care. No one knows anything about that side of our lives. It is your business alone.

So sorry you had to give up your nursing dream, I have a first class honours degree I can’t even use because of the cards we’ve been dealt. I worked so hard for it and was so excited to get my dream job but it’s just impossible right now. It isn’t a choice to not work and stay with our children but a necessity, there are no easy childcare options available to children like ours or jobs that would allow the level of absence required to attend all the appointments my children have or the amount of school absence or times I have to collect them early.

Just want you know you really are not alone in this but you can do it! As hard as it is and believe me, I know how hard it can be! It’s is bone achingly exhausting but you can do it, your children will think you are amazing even when you feel like you are failing or have no more left to give. You are in the early days of this, you will gain strategies and routines and you will have moments where you are nailing this life.

Your children’s achievements may not look like their peers and at first that can be heartbreaking but their achievements are no less! Remember that, your children are incredible and they will bring you so much joy. You will find strength you never knew you had and you will always pull through those really shit days!

Please remember to take time for yourself when you can, that is one thing I have never prioritised and it isn’t good. I am starting to try squeeze that in more recently and it makes such a difference.

I am rooting for you. You can do this!