How do I cope with the daily grind?

[Airysairy]

Just that, really.

My DS2 has a rare chromosomal disorder with delays and various medical issues. We have ten different specialists and multiple therapists and portage. I have a huge list of tasks to do with him daily and people keep adding more. Every specialist seems to detect a further issue or want him to be seen with someone else as well, so everything gets kicked down the line. My DS1 asked me if I was sad because DS2 can't walk yet and it is that, yes, but it is also that I can't imagine doing this forever and yet I have to.

My mum helps where she can. We have been turned down for local hospice respite services as his life expectancy is not definitely under 18, it is unknown as it is such a rarity (one of their nurses said I should apply for him but maybe more in hope than expectation , I don't know).

What do I need to do to make this more manageable? I would really welcome any ideas on how you have got to a place of less overwhelm.

Thank you.

I’m sorry, that is tough.

Was he fairly recently diagnosed, is that perhaps why lots of appointments and specialists are kicking in now? Or has it always been this way? If it’s a relatively recent thing then things will calm down appointment wise.

How old is your DS1, is he at nursery or school? If not then you’ll get some time back once that starts.

Can you ask the medical professionals what tasks should be the priority. I know it’s hard as they all think their own thing is top of the list and they will give you the “best practice” version and of course you want to do it all. But in reality there is only so much you can do and once DC get older they may also refuse to cooperate with more than a certain amount. So don’t be shy to say “if you had to pick one of those tasks which would it be”.

I know it’s a cliche and not easy but try to create 5 minutes here and there for yourself. Cup of tea or 5 min stretching or quick walk around the block. Do you have a partner?

Have you been in contact with Unique?

Although it can be stressful getting everything in place, I find having as much support in place as possible helps.

For example:
DLA (and any other benefits you are entitled to).
EHCP
Any adaptations and equipment needed.
Home Start.
Social care assessments (a carer’s assessment for you and assessment by disabled children’s team for DS).
Looking at your local short breaks offer.
Depending on DS’s needs maybe continuing care funding.
Your local young carers services for DS1 - Sibs can also be helpful.

Even if DS isn’t eligible for respite via the hospice there are other respite options.

Thank you both for the replies, I really appreciate them.

He was diagnosed in February and I suppose we are still feeling our way with many of the medical aspects. Like we saw respiratory recently and that turned into a discussion about immunity and more tests and a different specialist to wait for. Plus there is so little info out there that none of us know really what to expect - I feel awful, as though I am telling the doctors their job, but apart from a Unique pamphlet and other parents there is no data and no one has seen his condition before, so I have to share what I know and hope I don't sound patronising. And then the doctors listen and we get yet another referral and it feels neverending! (I do realise we are very lucky to be getting referred, it is just the frequency that is getting me down. And I HATE hospital parking!!!).

Unique has been a bit of a bust as there are very few contacts. I joined a Facebook group for the condition, which provided useful info, but several people have died recently and I couldn't cope with that knowledge at this point in our journey so I left. There are a few children in the UK with it but they are older and the parents didn't seem interested in contact. We have a special needs group locally and they have been wonderful, and they are attached to the SEND nursery where he should go at two, so I guess holding onto that will help. That he will be getting more help then and in the meantime I carry on with everything at home for this year.

My husband is supportive but works very long hours so the physio etc falls to me as I am at home. @minipie I love the idea of asking each therapist for the priority tasks - maybe if I make a list it will stop being such an amorphous mass of "stuff to do".

Also thank you @EndlessLight for the list to look at. We are awaiting DLA outcome and could really do with this as have been paying for private OT, SALT and physio alongside NHS while we waited to get to top of the NHS list. He has just got his wheelchair buggy and special list seating at home.

I will have a look at the local offer from the council (assume it is via them?). I was not aware I could get any help from social care so will explore that too.

Thank you again, both. Having some replies has made me feel less alone.

Definitely request an EHCNA (the first step to getting an EHCP). On their website, IPSEA (a charity) has a model letter you can use. An EHCP can fund therapies beyond what is available on the NHS. You don’t have to fund them. People may tell you DS is too young. He isn’t.

For social care assessments, Contact (another charity) has model letters you can use on their website.

Yes, the local offer will be on the council’s website.

Do you need any other equipment/aids/adaptations? For example, do you need a bath seat?

Brilliant. The SEND nursery have mentioned getting his EHCNA done this term so I will have a push (he should start next Sept) and then that should be one thing less to worry about. They are very proactive and helpful and we already have a relationship with them, which helps.

Social services originally told me they would only get involved with him at age 3 when I enquired about seating...his private OT pushed his wheelchair through so far and we have since been seen by the NHS and they sorted his seat but I guess I will have to get ready to do battle again. The next thing we need is a stander.

I will have a look at the charity letters, thank you. And I didn't know about Home Start so have given them an email.

It isn’t lawful for social care to refuse assessments until DS is 3. Send Contact’s letters. If you are refused following this, Contact has a letter to complain. You can always take further steps after that if necessary too.

Equipment can be provided before 3 too. Don’t let the council or NHS fob you off with that either.