Coping with being around other kids when yours have disabilities?

[SinkGirl]

I love my boys more than anything in the world, they are wonderful. They are 2.5 - one has multiple health issues / disabilities including ASD, the other twin only has ASD. They are non verbal and can’t understand words. They are making progress although it is glacial, but I celebrate every achievement and I am so proud of them.

The pain comes when I’m around other children or talking to other parents - just how different other children are, how every time I see my friends kids they have made huge leaps from the last time I saw them, how other kids at nursery are interested when I arrive or leave but my own kids aren’t. This morning one of my boys was clearly in pain but couldn’t communciate it - my friend mentioned that her (several months younger) DD had told her that her tooth was hurting and just that made me cry.

How do you deal with other children without feeling so sad and scared for the future? I just know life is only going to get harder when they get to the age where everyone expects them to behave very differently and I’m not sure they will.

Oh sinkgirl I’m sending you a big hug. I feel this for you as my beautiful ds is severely disabled & non verbal. I used to cry a lot in those early years especially as you say around other kids. No twee sayings will help but what did help was meeting parents in the same situation. They were the only ones who actually got it. Even family didn’t understand my emotions and professionals however helpful don’t live with our children. Arm yourself with good friends, get all the professional help you can ( Makaton signing is brilliant) and protect yourself from situations on certain days that you’re feeling fragile. Bet your boys are gorgeous mine is

My 8 year old has a rare chromosome disorder,and Asd and learning disabilities, he's also non verbal, the best advice I had was "find your people"find groups in your area with children that have similar disabilities I have made a lovely group of friends ,with some ladies that have children with similar disabilities, they get it.

You aren't alone. I find it so hard to stay positive some days when I see the huge developmental leaps friends' younger children have made compared to my non-verbal DC2 with ASD. Or the ever widening gulf between him and his NT older sibling. No advice from me yet as I've not really got a grip on how to deal with this yet but know you are not alone.

Thank you all, it’s good to know I’m not alone. I made a wonderful group of local twin Mum friends and they are all so lovely but they obviously can’t understand what it’s like. I know I need to find some local groups for kids with additional needs but something has been stopping me I guess.

Some days it just feels so unfair for them, and seeing all my friends children hitting their milestones and growing up is so hard. I just want them to talk to me, even just a couple of words - I hate not knowing what they need / want.

They are absolutely gorgeous and I am so lucky to have them, and I know it could be far worse - they are generally delightful, despite being 2!

You’ll keep swinging through different emotions but you sound like a lovely Mum & twins are a challenge anyway. My ds is 19 now so it’s a long time since early years but I remember them well. I still have days when I think life is so unfair for him but no longer find myself comparing his abilities with his peers. He is so far removed from them but a complete person in his own right iykwim.

I know we are on a different path to most parents and that’s okay - I will do whatever they need, I just want them to have happy lives, I know many with ASD do so it’s not the ASD that bothers me, it’s the associated difficulties and delays.

It's hard. I've seen work colleagues have children after me, whose children have learnt to talk, become toilet trained, started school and now have 'extra-curricular activities' ... Our almost-10-yo pours salt from the cruet set and licks it up, and pulled up the stair carpet this morning. I actually find it easier now that our son is older, he's so remote from what NT children his age would do, it's now a bearable difference.

I can understand that - at the moment I see people’s faces, wondering why they aren’t doing certain things or why one of them has to put every single bloody thing into his mouth at all times. And I know some people look at me and think that since they both have it it must be something I’m doing wrong, or I see the subtle eye rolls of the people think “yeah, sure they both have autism 🙄”.

It’s not so much about what other think though - I think it’s just the fear of the unknown. If I could see 20 years into the future and see how things are I’d find it easier, even if the worst case scenario in my head - I find the flitting between hope and celebration and crushing sadness and fear absolutely exhausting.

They are perfect, they are themselves, I wouldn’t change the fact that they are ND - I only wish I could take away the difficulties that could make their lives so much harder. I worry about what will happen when we are old, I worry about schools, it breaks my heart that they don’t interact with each other at all. Bloody Facebook memories showing me videos of them 1 year and 2 years ago, interacting and laughing at each other, before the regressions. I remember everyone saying that the payoff for the difficulties of having two at once is that they always have someone to play with - no chance, they don’t even acknowledge each other! One has just started wanting us to play with him though so maybe it’s coming. I think he tried to say hello today (all he can say is ga usually). It’s so bittersweet though.

It can be hard and I'm not sure it gets better as time goes on.

Because we have an only child we mostly mix with other disabled/SN kids. But there's a cousin the same age. Lovely child but I always find it hard after a visit because they are doing the things we expected ds would be doing iyswim. Not that we would ever let either child know....

OP I found the early years the hardest. My DT1 has a genetic condition and associated difficulties. He walked at 2.6 yrs and started talking at 3 yrs (but it was never certain that he would talk). I never really compared him to his twin because we are our own little family unit but I did find comparisons with his peers hard. He’s now 6 and has amazed me so much. The best advice I had is to not try to predict the future. I too swung between proud moments and feeling helpless but 6 years on things are much easier. He is his own person and I wouldn’t change him. I agree that you need to find other mums in a similar situation as it’s easy to feel isolated.