To think nobody cares

[Mumof3premies]

So little back story
my 2 year old has multiple health issues including kidney disease, bowel problems, a heart condition, he was very prem a& catches everything literally! He had had 9 surgery’s, sepsis 7 times, meningitis, pneumonia, group b strep, NEC! You name it he’s had it!

so next Friday my son is due his 10th surgery again no support or offer of help from either of our families and when we’ve asked it’s been petty excuses like ‘oh I’m getting my hair done,’ so I have to go with him alone AGAIN because nobody will look after our other children. So I’m already p**sed off about this as I really don’t want to be alone!

we have been begging for professional support as he is really delayed and shows every single typical sign of autism and global development, he doesn’t talk and is averaging about 9-12 months and he is 27 so they have put it to a panel and he has been accepted for speech and language therapy at the most intensive level, they also have done referrals for portage and have asked the development team to start the process for autism and to assess him in their team!

this was a massive achievement for us and I thought our family would be happy for us and that we are going to get some support but no all we have had is judgements and comments like we are pushing for a name on him! It’s really upset me!

I’m really sorry you are going through this without support from your family. At this point it might be less painful to stop sharing so much with them and trying to find support from others.

Are there local groups for parents of children born prematurely or with developmental delays? Your HV might be able to signpost you to groups or sources of support.

Wishing you and your little boy well for Friday. If you start a thread then asking for support I’m sure you’ll get plenty which isn’t the same as RL family but might help.

It sounds like you're doing an incredible job as parents. I'm really sorry that your families aren't supportive; that must be very hard for you.

Are they dismissive of your children all the time, or do they only back off when it comes to your little boy's health issues? Just trying to gauge whether they're cold/uncaring people in general, or the type of people who will play happy families on their own terms, wanting to come and fuss over the kids when they feel like it, but then immediately find excuses as soon as you need a tiny bit of actual help.

I wish I could offer some advice, but all I can really say that they're being dickheads. I can't imagine turning round to a close family member and saying 'Sorry, I'm getting my hair done that day' when asked to look after their child so they could both be at the hospital with a toddler having surgery.

we go to a local charity group that is for disabled preschool children but that’s not ran in the holiday which I’m finding really difficult at the moment as we both enjoy it.

my mum is usually really supportive but after her saying she’s having her hair done it’s really pissed me off so I’ve had an argument with her

I Have 5 siblings and not one has offered to help.
mum husbands family is useless they never even buy a birthday card