A differing reality

[eidsvold]

It just struck me last night - how our family reality is sooo different from others ( okay I know it is all the time) It just made me see it from dd2's perspective.

Dd1 has homework to do from her private speech therapy - exercises etc - we call them her 'words' well Dd2 was so annoyed tonight that she could not do 'words'. She does come to therapy with us and tends to join in - especially the PT - she just thinks she is playing with dd1 and the therapist.

For dd2 - that is her reality. So dh had to explain that dd2 already knew lots of words and that dd1 needed to learn more 'words'. Dd2 was still having none of it - she wanted to come and do words!! So dh had to get out a colour picture dictionary we have and do 'words' with dd2.

Just made me think - other people would think it was weird dd2 insisting on doing her 'words' like dd1 but to her it is just what we do. Guess it is a bit like dd2 signing - she still signs a few words/phrases and thinks nothing of it - I sign back to her at times but have caught others sort of looking at dd2 signing and speaking - no doubt trying to work out what is going on.

Am sure you all have experiences like that? Care to share.

not quite the same...but we have a tube fed doll

A tube fed doll? Coo. When DD is older we'll get a wheelchair barbie or soemthing.
But I know what you mean about our reality being different. Norms don't keep a seizure diary or spend 3 hours a day doing stertching exercises witha quadraplegic or wondering where to change the nappy of a 3yo or waiting ages at the bus stop hoping a wheelchair accessible one comes along eventually or having thrapists come into the house or, gosh, I could go on.

Ds1 has ABA after school; we call it his 'work'. When his therapists arrive ds3 always tries to dash downstairs as well shouting "me do work, me do work", and he sits at the table and wants to do matching (and get a chocolate button of course).
He's always trying to tell ds1 what to do as well. Hiliarious as ds3 is about half his size, but we hear "get down ds1" "no bang head ds1" being shouted by ds3 all the time. I'm sure he's going to become an ABA therapist

Whats ABA?
We've started physio type therapy called MEDEk. While I'm expecting DD to leap from her wheelchair and start juggling I'm hoping she'll be less stiff and avoid surgery.
Thats nother thing we differ with from norms. I now know more about brain function, epilepsy, rare epileptic syndromes, brainn plasticity etc than your average doctor and can converse on the subject of rare genetic disorders and all sorts. Pity I never go out or I could wow people
So can my older 3 kids. Plus they are now aware of the discrimination against the disabled and can name every step and lack of dropped kerb across the city! Oh, and march into shops and recite the DDA if the shop doesn't have a ramp.

DS1 was very keen to do 'table time' (our word for ABA) when we first started with DS2. Less keen when he found out he had to do what WE said though

Its only recently that ds2 has started asking questions about ds1 & it suddenly dawned on us that his norm for the last 4.5 yrs has been hospital & therapists with ds1 & so hasn't viewed his little brother or our family as different.
When ds2s nappies were delivered he said, Oh mum if M is wearing nappies at school its Ok cause theres a big changing thing in the disabled toilet. Not sure how many 7 year olds would consider such practicalities? But it is the norm for us.

we were at a SN playclub when DS made a dash for the door. Hubby and I both ran from opposite sides of the room but were beaten by DD who rugby tackled her brother to the floor - although being 2 yrs older DD is not as big or strong as DS but she is still the boss!

What forever amazes me is the acceptance of the kids at my childrens school (both are in same mainstream) We walk onto the playground and DS is surrounded by yr 6 girls who take him by the hand and expect him to say their names. (DS obliges which is amazing as he is essentially non verbal!) His own classmates (yr 1) have been with him from nursery. You hear them using the same expressions to get his attention "name ...hand" as they walk him into the classroom. He has "friends" in every year and we always have a group of kids to walk home with. They all touch lamp posts and railings with him now! DS is making our reality normality to loads of kids! LOL

they are brilliant.

something dd2 did today - prancing around on tip toes - asked her why she was walking like that - cause "x (physio's name) said to! No x told me that dd1 needed to do more of that to try and strengthen her calves.