"shes not disabled"

[Esmeismyhero]

So my dd (who is 3) has lots going on. She was released from hospital last Tuesday after an infection, from an operation she had to stop sleep apnea.

She was born without cranial nerves on one side of her face resulting in facial palsy, she has hyperacusis, hypermobility, severely long sighted and is being assessed for SEN.

She is very high needs but we muddle along. I've done several threads about my family in regards to my daughter.

Anyway, my dsis is supposed to be my best friend and I've always supported her through some rough times but since my ddad made his opinion clear about dd she's been mirroring their opinion.

So dd has been saying she wants to go back to pre school which I completely support, preschool said they would love her back next Monday after a risk assessment and plan of action in regards to her health needs.

Explaining this to dsis and she responds "I'm so glad I can just take my dd to school and not have to faff around like you", I was a bit shocked and said "it's good you don't have a disabled child". She was at me and said dd is not disabled, disabled is in a wheelchair (which I obviously know is also disabled) and therefore dd wasn't and I shouldn't be using that word so loosely.

I just chose to finish the conversation with "there are many versions of disability".

I feel so let down by her, I don't want sympathy but I'd like it if she didn't say things like thank god, iyswim.

I've had people comment on dds face saying this freaky and she looks miserable etc so her comment stung.

If she mentions it again what should I say?

It's very common for families to think this sort of nonsense when kids are small and any disability is not as obvious.

I was often told there isn't much going on with dD and it was just my parenting.

Now she is 9 and non verbal and has severe ASD they don't say it so much.

Your family sound shockingly tactless and rude though even if they think this.

Fan hats of to you,I worked with little twin boys years ago that were non verbal and had severe ASD they were lovely little boys.But I always thought about how much work they're Mum must have had to put in every single day.

Wow, can't imagine twins of DD

for everyone. Thank you for the advice xx

for you Esme, I have just looked at your thread about your parents (but not all the others). My dd(6) has DS, and we are at the point of pursuing ENT to see if we have sleep apnoea, also eye/ear tests at the hospital etc. I really feel for you, your family sound really horrible and unsupportive.

I think your dh is right and you need to move away. If not physically, then emotionally. I think you need to establish low contact as they are adding to your stress not supporting you. How low to have a go at you for trying to help your dd, what do they add to your life?

If your daughter is acknowledged as disabled, you might be able to access more help. Have you posted on the SN boards, lots of lovely people there. Also, you might get a support network of friends in similar situation to you.

Any chance she usually feels inadequate and in this one area she thinks she's somehow one up on you? Especially if she hears uninformed, unfair criticism from your dad. It's tough ignoring and detaching when DSis lives next door, and your parents are round so often. They are not medical experts. They're not qualified to speculate on DD's health.