AIBU to sometime be extremely jealous of parents with NT kids

[Studyinghell]

Just tht really, not that I’d wish his personality away or anything like that. But when things are hard Im so jealous of parents with NT kids and kids with no medical conditions

Maybe I think Ds might to vocational qualifications, who knows, he is only 6. Its hard, all these issues, than some parents don't have. They go through the normal education pathway.

@huggybear

“There will be millions of people wishing they had a child at all.”

Oh fuck off.

🙄

DD’s neuro issues result in physical difficulties rather than behavioural ones. I’m generally not envious of others not having to deal with similar because DD is also an absolute joy to be with. However, small things get me. Watching others sit sipping coffee at soft play as I inelegantly drag my sizeable arse through equipment not designed for me. Watching kids happily climb in to cars as I have to hoist a growing 9 year old, then her wheelchair into the car. Trying to organise anything, anywhere whether it be a theatre trip anywhere or a weeks holiday, without becoming an FBI type detective and spending hours researching everything about where we are going. Exhausting.

Oh Yabbers, massive hugs . I moan about my sN kids, but out there are parents like you having a much harder time.

my DS is 'academically bright' but can't cope in mainstream school. He absolutely aced his SATS in yr6 but only because of all the adjustments that were made for him while taking the actual exams.

He's just started at a secondary school that has a specialist unit for children with HFA.... to be honest, its a complete breath of fresh air.

The STRESS that being in mainstream during primary caused nearly did for me. He needed the full 30hrs of funding for a full time 1:1 and the work she had to do to abide by the LENGTHY EHCP that DS has wasn't a job I would have enjoyed.

I was worried he wouldn't get into the unit, they only have an intake of 7 per school year and I was told there were 100 applications for the places across the borough... it kinda floored me as confirmation of how serious his SN's are for him to have got a place.

He's a wonderful bright, intelligent boy but his physical, social and emotional delays, behaviours, stims, tics, meltdowns and sensory issues made Mainstream Secondary an impossibility.

aeroflot I agree; I was having a conversation with my mum yesterday and she really nailed it for me when she said "basically, the kids don't change their personality or who they are, its that our expectation of what they can achieve changes and ratchets up so much, they can never meet it" (I think this is more apt now than say ~15 or 20 years ago)

DS is 3 and incredibly bright (I don't mean to sound like a smug arse) but struggles so much with sensory issues, concentration etc it breaks my heart to physically see the impact this has on his learning and his ability to enjoy stuff like other kids.

This week's 'challenges' have been an awful playdate where he just wouldn't engage with the friend, and the fact I am sure his new preschool are angling to get rid of him because he's seen as difficult behavior wise as he gets over stimulated in class and can't cope (even tho he gets 10 hours extra support there)

Some days I feel like everything is ok, and then week's like this one make me want to cry all the time. But its best foot forward as you make it all try to seem no bloody normal for them

It's just too hard some days. A NT 10yr old would not be having a meltdown because his magazine hadn't arrived in the post. It just weaves its way into all aspects of life.

While DS is relatively "easy" to manage with his interest in computer games (he would happily be on the computer all day and hardly require me for anything), but it's heartbreaking to witness how hard he finds socialising with peers and how he actively avoids it. He is by nature disorganised, defeatist despite (or, perhaps because!) being very bright, very prone to anxiety and OCD type behaviours, which make me worry for his future in mainstream school when the expectations ramp up in secondary. I'm glad we are getting the diagnosis in place, so he will hopefully get at least some adjustments and help going forward.

Does anyone else ever worry that there’s something really scary wrong with them and they just haven’t figured it out yet? Maybe this will ease off when they actually diagnose his developmental issues but I have this awful fear that there’s something progressive happening to him and by the time they figure it out he’ll be in a terrible state. I don’t know if this is a “normal” thing to worry about. I’ve never known anxiety like this so I don’t trust my own thoughts these days.

He has been biting recently and today he started biting himself, left big teeth marks in his hand. I’ve been so worried about him hurting himself, I’m just hoping this stops.

Thank you so much sun that is so good to hear. It’s wonderful that your son is doing so well. That’s just fantastic. Did they diagnose him with anything specific? I don’t see much about regressions when I’m reading up. The professionals I’ve seen haven’t said much but they all look very shocked when they see the old videos. With him it’s like he suddenly became obsessed with walking and mouthing and he abandoned everything else. I try to get him to clap now, he used to do it on command, now even if I do it for him he can’t repeat it. I don’t get it at all.

SinkGirl this is what I was trying to say to you on your other thread, what sunsunsunsunsun has described.

2 is still so young

SinkGirl - i remember the regression being heart-breaking, i felt he had lost part of himself and I was terrified it wouldn't come back.

With difficulties in language acquisition i always felt that it was as though DS was learning French as i had to learn French at school. Difficult, not a natural acquisition, requiring many visuals and repeats.

My son has ASD - and it was hard when he was younger. He didn't sleep through the night until his was 4.5 years old, not being able to reason with him, his skin sensitivity affecting him being able to feel comfortable in clothes and limiting his food options, his meltdowns..the list goes on. It was difficult and my teeth are chipped from gritting them so often. But in comparison his symptoms are milder than other children's...and so I always knew how lucky I was. You completely have my sympathy and understanding. My son has a twin sister - and at the time I used to think that if he had of been an only child I would not have been able to bring myself to have any more.
I do have a happy story though - after years of different therapies including a recent therapy to help his infant reflexes go dormant, he has
gone from a child who did not look anyone in the eyes until he was 4.5 years old, to having low eye contact and now he has almost regular eye contact. He is sweet, adorable, loving and very kind..and very significantly - calm. Now 11, he is even starting to banter with people. Since his diagnosis I have learnt to understand him better (and how I need to be more literal with him and sometimes his responses are not rude...just him being factual), but also value and treasure some of his ASD symptoms like his amazing memory, his unwavering loyalty and how he craves physical affection (a plus of his skin sensitivity). He still gets into bed with us every morning for a cuddle! And I would not change him for the world - I would not want to lose the ASD traits he has that we love so much. We have even begun to appreciate how literal he is - some communication mishaps have made for some funny family stories!
I know how lucky I am - I really do. You and your child need and deserve more support and understanding. It's huge gap in the NHS services that parents with non-NT children and the children themselves do not get what they need. You are doing an amazing job. Please be kind to yourself. You are not alone, there are many people who understand how you are feeling. Good luck.

We are having a good week chez password. DS keeps joining me for company and TV now and is being chattier than he has in years. I have employed a PA (at the insistence of SS) to come and spend 5 hours a week with him. He is starting next Wednesday and I'm terrified that DS will regress badly.

Aeroflotgirl
Not harder, just different, I’m sure. Her problems are from the waist down. I’m not sure it would be easier if they were from the neck up! I’d have less back pain probably, but my stress levels would surely be higher 😄

I see my youngest mixing, having fun, people shouting her name, hugging her, happy to see her & wish my eldest could have some of that.

Yep, me too. It is what it is.

ASD kids can be very funny. Never ask if your arse looks fat

@huggybear empathy is what you need. Your out of order.

OP of course your not being unreasonable every parents wants their child to have the easiest run at life and there’s no denying the life is a lot less scary for a NT child. Doesn’t mean you love them any less or wish them away.

Have you actually read the thread then?

Thank you all :)

sun that sounds so like my boy, although emotionally I’m not seeing any issues so far. It’s so good to hear from someone who’s been through similar.

Sending to all