To struggle with envy about other people's kids...

[Failingonallfronts]

Hello - I pretty much know I'm being unreasonable, but would like thoughts on how bad this really is. I have an 18 year old DD, she's lovely but life isn't easy for her at the moment - she's autistic / dyspraxic / ADHD but at mainstream school in her final year. And at the moment it just feels that everything is such a struggle - she's battling an eating disorder, has very few friends and her exam results / predictions mean that even if she was well enough to go to uni, she probably wouldn't get in - or be able to cope with the course. She spends huge amounts of time by herself in her room just trying to cope. She never goes out socialising. Her obsessions are so bad at the moment that we can't even do a day trip or go out for a meal.

I met up with some other mum friends today and we were chatting about kids and all of theirs (who are peers of my DD) are heading off to Unis / straight As / getting part time jobs / planning travels around Europe etc. And obviously this is great for them and I asked lots of questions as I truly feel that my DD isn't going to have a better time just because someone else is also having a bad time. But it was really hard to listen to it all and stay smiling. These are all kids who were friends with my DD in primary school, but wouldn't even talk to her now. It's not that they deliberately snub her, its just that they move in totally different worlds. Although one of the mums named the kids her child was going travelling with and it was pretty much my DDs group of pals in primary - without my DD of course. I don't think she even realised what she'd said so of course I just nodded and made positive comments.

I know comparison is the thief of joy and I try to be really mindful of that, but in practice its very very difficult when your child is finding life so hard and others don't have that experience.

Is it terrible to feel this way?

If someone could just say 'look this bit is going to be really hard but they WILL be ok' then this would all seem easier to bear... but we can't see into the future.

Yes, yes to this. I feel this too. It's also so hard to constantly walk that tightrope between fighting for them and being hopeful for the future, and accepting of the reality of the now. I find that constant contradiction is mentally exhausting and holds us stuck in this awful limbo - unable to fully make peace with the fact their lives, and thus our lives, are not what we hoped. Because we can't make peace with it, because we have to keep hoping and fighting.

I often think of the famous line from John Cleese's character in Clockwise — 'It's not the despair, Laura. I can take the despair. It's the hope I can't stand."

@notwavingbutsinking

Yes this! In fact (in the spirit of gallows humour) when we are having a few good days and you let yourself start to believe that this could be it I often say 'it's the hope that kills you'

Spot on!

Not necessarily, it is very individual how much either condition impacts a person’s ability to function

Thank you so much for all the replies. It's been really helpful though my heart goes out to the many others who are struggling. I know how lucky I am to have DD and all I want for her really is to have a contented life. I'm hoping that will come in time.

I'm very lucky in that I do have plenty of focus on my own life - I've got a job i love which is definitely keeps me busy, and plenty of hobbies. But the worry about DD rarely goes away.

Anyhoo I'm going to sleep now (i lovemy bed!) so I'll properly read some of these responses in the morning. Thank you all! 🥰

OP I could have written your post. My DD is slightly younger at 16 but everyone else is looking at colleges to do A levels and she’s just scraping through life. You are not alone. There’s a whole world of parents of neurodivergent children out there. I keep getting asked about homework and mocks and GCSEs, none of which my DD will do as she cannot cope. She’ll do 4 GCSEs hopefully. Her friends seem to meet up in town etc but she sits in her room. They all have phones but she doesn’t as she’s too vulnerable

I'm really glad you've found it helpful, OP. I've found it helpful too so thank you for starting it. I hope you get a good night's rest. Tomorrow's another day and all that!

Totally get it. My older one is struggling through a levels and my younger one is being expelled for her adhd behaviour

I've pretty much ghosted all my friends with kids because I just can’t bear it tbh.

I so get you.

My DD is doing great just now but she essentially missed the first two years of high school while she was diagnosed with ADHD and ASD, and had an horrific period with her mental health.

I stopped seeing a lot of people because it was all chat about how much their kids were loving high school, and the French exchange trip, etc, and I would sit there knowing I'd spent the night cleaning up the cuts on her arms and the blood off her bathroom floor.

I don't know what to say to you, except do whatever keeps you all safe and sane.

A lot of this sounds very familiar. I have a 16 year old who has attended about 2 days in total of year 11 due to anxiety and extreme phobias.

i am really struggling with any chat about GCSEs, prom, college, festivals, holidays, parties etc as they seem so far outside my daughter’s world at the moment

Thankfully my friends are very supportive and keep telling me that she’ll be ok in the end but the process of getting her to be ok (battling doctors, camhs, asd assessments, ehcp assessments etc) is exhausting and slow.

I have actually pretty much made peace with the fact that she likely won’t get any GCSEs-I don’t even think she will be able to take them and that she probably won’t go to college next year but actually at present she is good company, funny and quite sweet which is a million miles away from the angry, secretive, risk taking, self harming girl she was this time last year and at least we have a better relationship to build from.

Your feelings are entirely to be expected OP. You clearly love DD and are rightly proud of her but the worries you have about her are absolutely brutal and all consuming IMO.

Since becoming a parent I've lost a parent, discovered DS' dad had gambled our savings and home equity, been a single parent of a toddler, been unexpectedly left by my husband and DS' beloved step dad, lost my job, got divorced and moved house twice. In terms of difficulty, worry and grief none of these things came even slightly close to the way I felt when DS had a period of poor mental health. It is brutal to see your DC struggle and my heart goes out to you.

You are all bloody fabulous mums and your kids are lucky to have you.

I completely empathise. I have two DC with conditions or illnesses that came on later in primary school. There is such a contrast between their younger years where I felt like friends and I were all in it together, and the current situation after illnesses and diagnoses, where an innocent conversation can end up feeling heartbreaking with the stories about all the things their DC are doing that my DC ‘should’ be doing.

You will probably have seen this piece of writing already but I found it very relatable :

Welcome To Holland
By Emily Perl Kingsley
.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Ive been struggling with this also, its a sort of grief for the life your child should have had that really hurts. I find I'm avoiding friends who have children who have moved on with their lives when my son seems to be sinking further and further into despair. It is tough op.

I'm just going to jump on here .I can't write much now but this is all spot on for me and so helpful, though sad, to know I'm not alone. I hope we can keep this thread going as a support.

Hey OP. AuDHD DD15 is about to take her GCSEs and I know she will probably have to resit. Shes not allowed to stay at her school as she won't get the results and I'm torn about what to do for the best next.

It's so touch watching other NT teens sail through, have normal friendships etc when my DD tries so hard to do the same.

It's hard and you are NBU.

I hear you op. My daughter is just a few years younger. People just don't appreciate how different life is. Sending solidarity to you.

@jeaux90 ditto with my son. I have found a college course that only needs a few pretty low grades at GCSE and I think he'll likely go there to either do that or just resits. Right now I wish I could just fast forward the next three months of every morning dreading the "is he going in today" battle ..which I am now starting to just not fight for the sake of my own sanity. I've got everyone on my back telling me to be tougher and blaming me and wondering why I can't "just make him" work. It's awful.

I don't avoid my 2 v close friends ... they get it and aren't really having loads of conversations about uni offers when I'm there. But then they can't win.. I also hate that these conversations are having to go on without me there like they have to temper what they talk about in front of me! It's lovely that they are mindful of it but I hate that this is a thing too.

I gave up the battle (after fighting it pretty much every day since she was in year 3).
I keep wondering if I’m doing the right thing but it was destroying my mental health, my job and our relationship.
It got to the stage where she would run away even if I did get her in and our whole life had become focused on trying and failing to get her into school.
I am really hoping that with help she will be able to make her own way in life. It’s not in any way how I was expecting her life to go and I constantly blame myself for messing it up somehow.

I totally get this. On balance I've decided I actually prefer it when friends don't walk on eggshells and talk freely about their DC (as long as they aren't droning ON and ON about how wonderful their DC are in a way that would be insufferable what ever the circumstances - but I've gently exited myself from those kind of friendships!)

It bloody stings of course by I find it easier to just face it head on. I find the self conscious avoidance of certain subjects and the sad sympathetic faces is actually worse. I dunno, maybe in some ways it has similarities to when people avoid talking about someone who has died for fear of "reminding you". As if it were even possible to forget for a single second.

I do find it very hard when people try to express empathy by offering some sort of comparison from their DC's lives (unless they are actually going through similar, of course). I completely understand why people do it and I'd probably do the same if the situation was reversed, but it has the opposite effect and actually just highlights the gulf between our experiences I much prefer a heartfelt but unsentimental "That's sounds like shit, and I'm so sorry you're going through it".

I keep wondering if I’m doing the right thing

God yes. The self-doubt over every decision (or non-decision) is so hard. There is nothing I would not do or sacrifice in my own life, for any number of months or years, if only I knew it was the right thing and that eventually it would "work" and DD would recover and be happy.

But recently I've been increasingly feeling that DD has to find her own way and that I need to step back and let her figure things out in her own time. But the thought of doing that is terrifying when the stakes seem so high and every month that passes seems to widen the gap between where she "should be" and where she is. And if feels so deeply wrong to not be doing more. What if this decision to step back is actually the wrong one?

I wish someone could give me a bloody manual!,

@notwavingbutsinking please share it if you do find a manual!
The only advice I would give someone in a similar situation/to myself a couple of years ago would be to take her out of school earlier and get some proper home Ed/online school sorted instead of ending up in this year 11 limbo.

Totally relate to this.

DD10 recently been given ADHD diagnosis, hers manifests itself with very impulsive behaviour. Some of the risks she will try take are scary not to mention having to be on the lookout all the time to make sure she doesn't act on the impulses. We also have DS and another DD on ASC pathway.

I look around and see children who are so easy going and have friends and go in to school fine.

Just kind of makes you wish your life was easier and that your kids didn't struggle. I was in a meeting with DD school a few weeks back and started crying when I saw all the children just being children and enjoying being with their peers.

@notwavingbutsinking

I hear you. Nobody can truly understand this particular strain of stress and anguish unless they have been or are going through it. In the same way that I can't lots of other peoples' situations.

I found the Parenting mental health and Not fine in School private FB groups absolutely invaluable for solidarity and understanding / advice when my DD was at her absolute worst for 18 months. I definitely stopped going to wider social gatherings (partly because it wasn't safe to leave her) but also I couldn't bear all the chatter and the inevitable (accompanied by concerned face as they will have heard bits and pieces) so how's Lily (not her real name) doing? ...
followed up by.. 'well Richard Branson left school at 15' Etc etc

I know it's well meaning and what are they supposed to say exactly? But it's easier just not to be there in the first place!

@fedup1212

Agreed. It used to make me so sad (not for them) seeing all the kids walk past my house in their uniforms to school when my DD hadn't been able to go anywhere near the place for a year, same with seeing them all hanging around together afterwards. It's bloody everywhere.