Advice re health problems baby born 26 weeks

[TulipsfromAmsterdam]

LO was born at 26 weeks and suffered many health problems. Almost 2 years now and has moderate hearing loss amongst other concerns.

We see paed 4 monthly, have regular visits from hv and hearing loss team and attend physio group as not yet walking.

My main worries are more to do with behaviours and whether I should be concerned so would be grateful for some advice please regarding:
Head banging - on floor, hard surfaces, me and also hitting own head with dummy or fists.
Lots of excited arm movements.
Temper tantrums which involve thrashing about
Constantly wants to walk around holding hands and doesn't like to sit with toys for long especially with me, though can play with other family members for a short time.
Has a fascination for things which spin/rotate and flashing lights.

LO suffered seizures at birth and I wonder if this could cause problems later on. Also regarding walking was taking quite a few steps then stopped and will not attempt to walk alone now.

I would appreciate any info as I would like to be prepared for CAF and not fobbed of with normal terrible two's as I have been to date. Also people will say behaviours are sensory issues but I really don't understand what this means :(
TIA

It sounds like there are some very important issues. Hearing loss, ex-26 weeker, not walking, previous seizures... should be plenty to qualify as 'not just terrible twos'.

'Sensory' usually means a dc has an unusual way of 'processing' what comes in, and is a sign you need your dd to have a proper occupational therapy assessment. Plus a really good eye test.

The tantrums, head banging, limited interests, attention probably aren't 'normal' but could be a reaction to the other stuff, or something in their own right. Either way, there are techniques to help reduce them. But you'd be surprised by the rubbish some professionals spout.

Watch out for, "in her own time", "they all catch up", "of course, you'll have had trouble bonding with a preemie", "are you anxious?", "it's all quite normal for a [insert selection from prem/deaf/slow walker]", "you don't want to look at the 'special' nursery", "of course she won't get DLA/a statement/1-1physio/whatever"

Sorry, I've been v cynical tonight, had a bad run this year. There are also lots of amazing professionals who know what they're doing, don't deny when services are inadequate and will always point you to the next person when they've come to the limits of their own ability to help.

Hi Tulips, it may be that the combination of prematurity, hearing loss etc have caused delayed/disordered development. It may be that he goes on to have some long term effects.
As he is having paed follow up anyway you shouldn't (fingers crossed) have a battle to get the support in the same way as parents who are trying to battle their way in to the system.

Insist on support from all services, have you got portage & OT? What about SALT? Don't let anyone discharge him unless YOU are happy, don't accept "lets wait & see" unless he is already getting the therapy & intervention he needs.

My ds2 was born at 28 wks & has mild cerebral palsy, autism & learning difficulties. I have always tried to approach meetings in a business like fashion (I pretend I'm at work & wait till I get home to cry)
Make notes, ask them to repeat or explain anything you don't understans, ask them to slow down if going to fast. Make sure you record the named person responsible for each discipline involved with your ds, get timescales & quantifiable levels of involvement.
Try to have an idea before you go in of a few things you would like to achieve from the meeting.
make sure it is recorded that you want a copy of all reports etc.

I can honestly say I have always found everyone involved in ds2's care to be lovely & have always welcomed out involvement and input.

Be calm, polite but firm.

When you get home make sure you do something fun with your ds so it doesn't become all about his needs.
Good luck