To avoid my friends for a while. SN child and I’m jealous.

[DefConOne]

Really struggling seeing my friends DC leaving year 6. They are all doing so well with academic and sports achievements. All enjoying parties and leavers assemblies. My DC is at special school as has been unable to cope in mainstream due to her ASD. She isn’t happy about it.

I feel like a bitter, jealous cow but I can’t join in with the conversations and it is really painful. Luckily I have a few child free friends so I am trying to spend time with them.

Do I just suck it up and nod and smile while my friends chat about their DC, or just avoid them for a while?

God, Hercule, that’s hard. Hope brighter times are ahead for you both. You too, Sinkgirl, you sound amazingly strong.

I will admit, I have struggled. My close work colleagues have had children after me, and I've tried to share the joy of their first words, toilet training, starting school, joining cubs/brownies etc. But it's bloody hard. Their children are all younger than my son, and they are all far more capable, far more developed. Simply put, their children are "not disabled".

Comparison is the thief of joy I've never heard the saying before but it is very true.

I don't avoid people with NT children as I've learnt to mute my feelings. But I don't actively seek them out in a social setting either.

HeadInTheClouds it's horrible, it really is. DD surprised us by saying she would like a summer job, but no one will take her on despite her finding the confidence to apply for jobs and go to interviews. I'm so proud of her for trying though. She's going on a supported course in college in September. I'm pinning my hopes on her finding a friend there.

Op, unmumsnetty hugs to you.

How old is she, Hercule? If over 16, have you considered NCS? Might be a bit late for this summer though.

Hey Hun,

ASD little boy here too, I know the feeling!

Similar situation but younger child...do whatever you need to do Personally I find avoiding those situations better for me- it’s just exhausting to smile and nod while pretending to be ok

well as long everyone notes her friends have not done anything wrong

Yanbu, take a break if you need to, this time of year is especially hard with everyone talking about their child’s fantastic school reports/exam results etc etc

She's over 16, yes. Hadn't considered NCS but she's hopefully going to be helping at a local animal sanctuary. DH and I will top up her pocket money as if she were earning. It's all we can think of to do.

Xx

Poirot we are doing the same. A friend is taking our son for two weeks work experience in Summer; we are going to do a weekly balance transfer to give him the feel of earning.

YANBU. My autistic DS is 20 now and the bitterness never goes away. His needs were severe enough to go to special school, and his path through education and life generally has never been the same as his NT (or HF autistic) contemporaries.

I have learned to nod and smile at parents of NT dc as I know they simply have no idea what it's like. One thing that does help me reframe his situation is to consider the flip side of his severe needs - we've sailed through or avoided issues that have been problematic for others. No student debt (because his LDs are so severe he can't go to university), no girlfriend problems (never had one), no friendship problems (he has none), got his EHCP and special school place with no issues (as it was so obvious how severe his needs are), no problems claiming DLA/PIP/ESA, no problems with flatshares/getting on the housing ladder (because he got a council flat through SS as soon as he left special school), no commuting costs (as he can't get a job/has a disabled bus pass), not being stuck in a grim zero-hours job (because he can't get a job/has enough income from benefits/would rather be following his special interests). His life is nothing like most 20 year olds but he is happy and that's what matters.

I have a friend with a child with SN. One day I was brainlessly going on about my DS and some hope I had for his future (I forget what, but it was probably university or a profession or something like that) and she very calmly interjected with, "Having a child like [James] has made me redefine what success looks like." I think that this was an excellent way for her to very firmly but gently let me know that I was rubbing salt in her wound. It totally made me rethink how I speak about my DC to others.

She opened my eyes to be more empathetic to what other parents might be feeling. Maybe if you are close enough to some friends with "mainstream" kids, you could try opening a similar conversation, to help them realise they need to be more considerate of your feelings.

AbstractedObstructed sending your DS lots of best wishes for his work experience x

OP, big hug to to and your DD.
As @SinkGirl pointed out it’s not knowing if they ever be able to... insert your choice.

I have 2 kids, younger with ASD. Our family is split in half. We juggle the kids between us because I don’t want the older one to grow up resentful of parents dedicating most of the time to disabled DC- there was a thread about it a while ago and it was a very sad read.

I bet nobody wanted their child to have ASD. Leaving the hospital with healthy baby only to watch it regress a while later and then bang, the diagnosis comes as an aswer crushing your world.

Screaming for hours, destructive behaviour, not sleeping, staring at the walls for hours,faeces smeared all overthe house,still non verbal and in nappies.

The questions and statements from the other people.

So he has autism, awesome, what’s his gift? You know, autistic kids are gifted? No?
You must be so proud of him, of his achievements.

What to answer to these people? No, he’s not gifted. Proud that he learned to eat with spoon at the age of 4?

Missing yet another school assembly for the older child being given his prize because his brother screams the place down.

Going for the open day at the nursery where the other parents discuss with teachers the achievements, activities and discuss with their child their work. I have no joy as such. My child’s folder is empty.I can’t have coversation with him.

I love my sons dearly both of them but it hurts like fuck when people are blabbing things without thinking and you just nod and smile only to howl when you’re back home.

Fuck you autism, just fuck you. Why my child?

Yanbu

sounds really tough.
look after yourself.just remember how brave and strong and amazing you are.for getting where you are.for coping when you can.and for not falling down on those horrid days and not getting back up.your surviving if your not thriving yet.and every little milestone is just as important as theirs.
keep going.you can you can you can.
big hugs and strength.
scream
shout
hit a pillow.
and onwards if you can.
its not easy.
but i think your wonderful for just being.

Yep I was there on Tuesday when I stood with my previously best friend who was complaining about giving up her free time to attend her son's church service feeling like I would give anything to be joining the celebrations. She didn't seem to get that I was upset that I had to pull my child out of school 8 months previously, find a new school miles from our home and pay for it because they couldn't manage her ADHD (or even recognise it). That I felt sad because my child wasn't moving up with her friends into the next class but instead had to be educated outside of a mainstream setting because the school and LA wouldn't support us. I am fortunate to have found her a place in a small independant day school that specializes in SEN but it was not what we had hoped for. I am grateful that we found a solution but I am not grateful for the education system/government that talks inclusion but actively practises exclusion and causes severe damage to the mental health of parents and children alike. Sorry bit of a rant but I hear you. SEN parenting is hardcore.

reading and crying as im right there with you and relate to so many of these posts.

@Peckalina sorry if this is a stupid question but why is mainstream school so important to you?

@SinkGirl your words do resonate. Especially in the hopes and aspirations. My 6 year old DS has only just come out of nappies by day, while my friends kids aged 3 are already ahead. University? It’s more like can I cope and who will look after him when I’m gone. I could have written this.

Now I don’t know if they’ll ever be able to talk. When they’ll ever be out of nappies. Play with another child, or even each other. Live alone. Even if you’re relentlessly positive, it’s extremely hard to come to terms with these things, and even if you have, seeing development just happening to others when you’re fighting for every glance or clap is so so hard.

OP your child sounds like she’s got a lot going for her. I do get it, I’d still advise keeping good friends as they will weather everything with you. Acquaintances you can drop if needed. But keep good ones. Sometimes the SN world can be very claustrophobic too.

Your child reacts badly to demands? Same. The most relentlessly tough thing to deal with, it gets in the way of so much potential and learning. Do look up PDA websites and get those SN teachers able to cope, I share lots of stuff and practically train the SN teachers, it’s worth it. Good luck. You aren’t alone.

Ivanapee - it's not that mainstream is important to me but it is has been the only option available to us. It's a long story but my DD has had issues since Year 1 which were largely ignored until her anxiety became so bad in Year 4 that I had to remove her from school. The school consistantly blamed me and 'my anxiety' for her difficulties which I knew was not true. Peadiatrics and OT apparently found nothing wrong (I am waiting for a 2nd referral). All tests I have paid for come back with clear identification of SPD, ADHD and anxiety. I have been refused an EHCP and there is no chance of a specialist school place. Luckily I managed to get a place in a school that I have to pay for. It is not that I want mainstream education but when no-one believes there is a problem and the only options are inadequate mainstream schooling or homeschooling then I am left with little choice. I tried homeschooling but children with ADHD are very hard to motivate and I am not great at teaching my own kids. I am just cross that because DD is a girl with ADHD she goes under the radar and does not get the help, support or funding she needs.

Thanks for answering. I’m so sorry you were put through that.

I have a globally delayed child (rare genetic condition). I told someone the other day that my child is globally delayed, they asked her age (18 months) then asked if she was walking (no!!)... and said "god she's a late starter"

well as long everyone notes her friends have not done anything wrong

Nobody said they did anything wrong. It’s not really relevant though is it? If you had a series of terrible experiences and ended up reliant on food banks, it would be very difficult to join in with friends conversations about going to fine dining restaurants.

Sometimes life takes us on different courses to our friends, and that impacts on friendships. The friends may* not have done anything wrong, but neither has OP - she’s not choosing to find the situation distressing.

(*i say this because it’s hard to know the context - they may be sensitive to OP’s feelings, or they may be regularly saying things that are really insensitive)