Having the different disabled child

[Albaba]

Does sometimes it just hit you like a slap in the face that your child is noticeably different to their peers and you get that sadness all over again? Yes it was Sports day today.

My dd 7 has CP but is in main stream school with 1 to 1 support. We have worked incredibly hard to get her to were she is now and generally have accepted the situation for what it is. It's just when you see all the other kids line up and run and balance things on their heads with no difficulty at all and she is all unsteady and comes a mile behind everyone else, you think this is shit. Everyone else in the School could produce 'normal' kids except me.

To top it off we got a party invite but to an activity which she is not going to be able to do but all the other kids will. 99% off the time we have just accepted the special footwear, the braces, hundreds of hours of physio, botox, probable surgery in the future, this is along with us both working and have another child. But today have just had a bit of a wobble, along with pmt am grumpy anyway. I just don't see things getting any easier for us as she gets older, there will probably just be more challenges and difficulties. It's just not a situation I ever imagined I would be in. I just thought I would be in the other 99% of people but sadly am not.

Have a hug.

I feel like this too, watching other people's 2 year olds. They're all so socially competent, so good at following instructions, so self-directed and exploratory. They're all learning so quickly.

DS never initiates social contact with other children, actively avoids them or ignores them. Only explores new environments for their plumbing and heating systems or weather stations. At playgroup he always wants to either be pootling round on a tour of duty doing exactly the same things as every time before, or he wants to be up on me. The other children may as well not exist, so he learns nothing from them.
He started out seeming incredibly academically bright, with super-early massive vocab and complex language, but ASD and the absolute need for consistency is like this massive screen that gets between him and learning. Looking at lists of "great games for 2 year olds" I can't actually imagine him having the skills or understanding to do most of them, and he's 2 and a half. We tried "I spy" recently and he just kept asking us about the same thing, clearly didn't understand that it was a game or what he was meant to do. Increasingly he looks very developmentally delayed.

Yes I get it

Last year we had all the Y6 end of school madness so I got to see my DD up against her peers in very stark contrast. We also had Sports Day where she came last, dropped everything and looked really odd, next to the gazelles in her class.

I try not to dwell on it but it does give you a touch of the 'why me?s'. Someone will be along in a minute to berate you that at least you have a child, but those of us with you in the the SEN boat truly get it.

Yes I get it too.

My son came last in everything at each sports day and party invites dwindled over the years. I was dreading him speaking at his end of year (6) concert as he was so angst about it. However he was determined to do it and he spoke beautifully in front of a packed hall.

He is desperately trying to make friends out of school at the moment and gets so upset when kids wont give him their phone number or reply to his messages.

I'm feeling this too and it made me hide away and not be around other 2 year olds her age , but we are going to a rthyme time session as she does like singing and i would like to see friend I haven't seen for ages due to hiding from mum friends . My daughter is same letsgooutsiiiide, we do go to a baby sensory group where my daughter loves also my 12 week old goes so i speak to all baby mums which i find easier as they are not my daughter's age.

@chicken2015 does your DD go to some form of nursery without you?

DS started at Montessori a few weeks back. After a rough few weeks, he has started to look settled, and to interact minimally with other children. His language has also massively improved - much more spontaneous language at home, and using it more around the other children too. His eye contact is still very reduced compared to others, and his body language suggests he's not interacting, but listening to what he says (and being the only one able to interpret a lot of it) there's a lot of interaction coming from him now.

Big hugs from me. I too have a child with CP who went right through mainstream school with 1:1 support. I recognise your feelings, it's tough. It doesn't change over time but you do become more resilient. My daughter is now 27 and lives independently with help from carers. My proudest moment was when she wheeled across the stage in her powerchair to collect her degree certificate. I last cried about her "condition" when she put in her gown & mortar board as when she was little, I was told she wouldn't manage mainstream school & had no expectation for her other than that I'd try to give her a happy life. Do you have other children? I've found it helpful to have her sibling who has been able to take part in activities without issues so that I've been anonymous rather than "CP girl's mum".

Letsgooutsiiiide yes she goes to a pre school 3 morning a week, we have early years team involved and they are bringing an autism specialist to come to pre school and home, im also sending her to autism specialist pre school but not till sept as on waiting list

I went to rthyme time and it actually went ok and my little seemed to enjoy it, we then went park after fir picnic with few of mums which was nice it was hard listening to them compare each of there children with what they know colour, animals and their speech, not sure how that gets easier

Crikey this rings true for me too.
My dd manages part time school if we are lucky. She’s 10. I wave her off in the morning and wonder if I will see her again. She’s at mainstream but has a condition which means she stops breathing roughly 3 times a week. It’s hideous. She can’t exercise as it causes a problem. She’s desperate to play and run and be like her friends. I watch and listen to the other mums in the playground moan about trivial things and I want to scream. Just to drop my child at school and pick her up at the end of a day would be an achievement. Instead, often, it involves an ambulance and life saving medical intervention at some point. I want to scream and shout and cry. Often I do. Life’s so shit sometimes. But then I hold her and squeeze her and realise that love is worth a million sports days or plays in the playground.
I really do get how you feel. Sending an empathetic hug from me to you xx