Those with more than one dc with a disability how do you manage?

[autumnsmum]

Morning everyone sorry for whine .As you all know I have a ds who is 8 with hfa and a dd who is 3.6 with autism . I also have dd 14 who is going through a teenage depressed phase . the question is how do people manage all this at the mo I feel a complete failure . The house always seems a tip and the sofa is broken through dcs jumping on it . I am going to apply to family fund for help with that .Dp also has depression and agoraphobia .So pls experienced mnsn people how to i try and balance all this .Sorry for moan had a bad night cos I've realised with hrc dla and statement that dd2 really is disabled if that makes sense

My eldest has erbs palsy and autism and my youngest has autism and adhd (and asthma and anaemia) and I am also disabled.

The best advice I can give you is to GIVE YOURSELF A BREAK!

Be kind to yourself. You are only one person. You aren't superwoman and you can't do everything and that's ok.

Do what you can, as you can, and don't torture yourself with thoughts of I should do this, I ought to do that, other people manage why can't I...

You are not a failure. you are a person with a lot on her plate doing the best she can.

If you had to pick one thing to sort out, what would it be?

Thanks dd2 has a rotten cold at the mo which is making her very grumpy and even more autistic than usual .Thanks for response I will phone for grant form for sofa today .Then I will feel I have done something positive

I agree. You just have to let some things go to a certain extent. I have DD who has cardiac issues, is partially deaf, she has Hypermobility syndrome, GDD, dyspraxia, dyscalculia, dyslexia, and 'Autistic traits' (am in the process of trying to get it formally dxd).

DS1 has probably got Aspergers, am waiting for a referral to CAHMS for him.

DS2 has severe Hypermobility syndrome, hypotonia, kyphosis, dyspraxia, GDD, chronic brittle asthma and 'Autistic Traits' that I'm trying to get a formal dx for.

DS3 has multiple life threatening allergies, dxd hyperactivity 'with a high probability of ADHD but too young to dx', and he is being assessed for Autism in May.

I have epilepsy, Hypermobility syndrome and arthritis.

I feel very overwhelmed every day! My house is a shit tip, I try my best to throw everything in the general direction it belongs in every few days. I gave up on a tidy house years ago!

I have DD with chromosome disorder resulting in severe physical and learning disabilities and DS with HFA.
I always tell myself that there are many people worse off than me - and I have met lots of them in RL and read about plenty on MN SN.
You just have to take each day/crisis as it comes - when you reach rock bottom, the only way is up! You can only do so much, but it takes a long time to realise that remembers back to the days of running around trying to clean and tidy the house before any visiting professionals arrived

Try and get some time to yourself - easier said than done,I know. BUt if you can have a little bit of 'me' time, the rest is easier to cope with.

Thank you all so so much for taking the time to answer your all dealing with so much ,I feel embarrassed moaning .Couthy did your washing machine get fixed ?one more question do any of your dcs go into meltdown if you try to tidy any of their stuff away ? My dd2 goes mad.

Hi my circumstances are maybe not so difficult, I have 2 kids, one recently diagnosed with ASD. If I am having a bad day I sort of work on a minimum basis, ie bleach down the sink and bogs, food on table and clean clothes ( not necessarily ironed!). Then cup of tea, sit down and try and get some head space! Lol at cleaning the house for professionals, I work on the basis that clean kitchen and loos are the important bits! I remember a HV saying to me that she like coming to my house because it was messy and that's how she grew up lol I was a bit but she said she was more concerned about the people with kids and ultra clean/tidy houses I have used it as an excuse to live in a tip ever since

All four of mine have a variety of issues. I've just learned that if they're fed, clean, occupied and happy then everything else takes a back seat. House hasn't been tidy for years, and tbh I've just learned to accept it.

Agreeing that you need to be kind to yourself.

Both the boys have ASD. DS2 climbs on everything ans shrieks a lot. DS1 has ADHD, too, shows PDA tendencies and is highly impulsive and prone to anxiety, all day rants and aggressive behaviour. On top of all that, I have HMS and a real need to pace myself, or else I end up in the mess I'm in today (tired and sore and severely lacking in spoons).

Even with DH doing his bit when he's not at work, keeping on top of everything else is hard. I prioritise nutrition, clean kitchen, clean loo and sink, clean boys and clean clothes. Everything else is negotiable. I'm ignoring the toys all over the sofa bed, this morning because I don't have the energy to move them. The beds are unmade. We have duvets, so who cares?

It is very, very difficult.we are not managing well just trying to keep on top of things and its exhausting.
Dd1 (11) has EDS, POTS and pectus excavatum
Ds1 (6) has EDS, severe migraines and severe allergies to milk,egg, nuts+shellfish.
Dd2 has EDS, allergies to same as ds1 although not as severe and t1 diabetes.
Ds2 (11m) has EDS, allergic to same as above and pectus excavatum.
DH + I have EDS too, dh also pectus.

Every day at least one person dislocates something and its horrible.

Dd2 had a hypo this morning at 1040am (2.0) and lost conciousness. She is ok now but I have just spent 20 min sobbing as can't do this anymore

Wish I had some advice how to cope to help you OP

Both of my DCs have challenges, as well as me.

We all have the same disease - DS (14) and I were diagnosed after DD (7) was - her presentation is most severe (she was referred to Hospice last year), but all of us are affected, and it is degenerative. What a happy bit of news it was to learn that I had given this "gift" to my children...

I guess the answer to "how do I do it" is "I just do". I have days where I have difficulty walking, can't lift my arms (part of the disease is myopathy, progressive weakness) - those days I only do what is absolutely necessary. My house is not always beautiful, my sink is not always empty, sometimes we'll have takeaway for dinner even if it is not in the budget... I pick my battles.

With my DCs, despite the fact that they both have autistic traits, the physical and medical impact of their disease is more pressing than the developmental. I know I should take more time for myself, and that I am speeding up my own deterioration by "overdoing" it, but I do what I can, when I can.

Thanks again everyone ds has hypotonia as well as autism and that contributes to his terrible handwriting .Senco phoned and said he needs a laptop for work on fri his class teacher told him off for his awful writing poor boy can't win