To think you can't really enjoy life with a SEN child.

[Onetwothreee]

I know it sounds awful.

My DS is 2 and is on the list for an ASD assessment but that's still quite a long wait away. But each day that goes by gets more difficult to cope with him.
I don't enjoy many aspects of life any more because the daily struggles are just getting too much. I feel like realistically you can't enjoy parenthood in the same way as parents of NT DC.
I look at my friends with their NT children and I am so envious. They seem to be able to do so many happy and enjoyable things. They can't really relate to the struggles I have with my DS as they just don't understand, not matter how well they mean.
I am just so tired of the meltdowns, the constant appointments, the being trapped in a rigid routine. I have no social life any more as I can't take DS with me to coffee shops or anything like that and as I have no family to help me I have to do it all on my own. People have stopped inviting me out.
I am depressed and have sought help and am on medication. Unfortunately the medication gives me unpleasant side effects so I end up spending the days feeling unwell instead of sad.
It all just feels hopeless, like my DS will never be easy and I will struggle for the rest of my life with him.
I feel robbed of the opportunity to enjoy parenthood.

Oh maybe I need to read the poem again I’ve only read it the one time my friend shared it, I thought it was lovely, maybe I’ll hate it too if I read it again maybe it was what I needed at that time who knows?

I have a 7 year old son in specialist school with autism adhd and ld . Life is extremely hard. It does suck the enjoyment out of things . I’m a single parent and my son is 2:1 when out with respite staff etc .
I do envy those with neurotypcial children who can do average things without it being so so very hard .

Do not read “welcome to Holland”, it’s the worse poem ever.

There are times where I feel I’m missing out on lots of things in life, I feel I have been robbed of a career, it’s hard to have a social life, it’s hard to go on holiday or attend family events, the lack of sleep and the stress is a killer.

I have however learnt to enjoy life even if it is the smaller things, most of the time I can say “I love life and appreciate what I have” but there are also times where I feel life’s unfair, I try and focus on the good things and most days I manage it. Some days it slaps you in the face, I wanted to travel, I wanted a career and I planned that when my kids reached their teens that they would be able to look after themselves. Instead I find myself bathing my 15 year old, having to lock doors to keep my 13 year old safe and not being able to go out with friends.

I also hate that stupid welcome to Holland poem - f*ck off Holland

💐 for you OP. It is hard. My son was diagnosed at the age of 2 and it was a real kick in the guts. My elder brother had SLD and I felt 'cheated' of a normal family - turns out I carry the faulty chromosomes too.

I won't lie; you will have bad days. The highs are higher but the lows much, much lower when you have a child with LD. To the pp who said life gets easier when settled at school; brace yourself. When my son left special school his options seemed very limited; the world had opened up for his sister at university, but his horizons narrowed considerably. I could foresee him doing bloody leaf prints every autumn for the rest of his life..
You have to turn into a Warrior Parent, and push and push to get things done. Do try and find some support IRL - other parents are huge support and don't judge you. See if you can sort out some respite care
I hate that Holland nonsense.

I think it’s normal to have phases where you accept it and are coping well and then some tiny thing detonates the world. I posted the other day - my twins were both really unwell with god knows what illness, one was screaming and seemed in pain but couldn’t tell me. A friend mentioned that her (younger DD) told her that her tooth hurt - it just crushed me that they can’t communicate with me and that wrecked me for days

Oh yes welcome to Beirut is a much better poem. I agree with @LonnyVonnyWilsonFrickett the SEN boards on mumsnet were a vital lifeline and also kept me sane 9 years ago. It has been 8 years this week since my son was diagnosed and that time was the hardest thing i have ever had to do. The appointments and feeling judged by professionals who came to our house. I also felt completely isolated. My heart goes out to you OP it is the worst time. Can you see if there are any support groups locally? Does your local offer website for your council list any? We used to go to an ASD one on a weekend and also our local softplay did a SEN session and both of these were good ways to meet others. Ask the professionals that are supporting you if they know of any other parents who are also going through this. They may be able to put you in touch with some other mums.

OP!

I promise, it will get better. DD has ASD and severe LD and the toddler years were the hardest. it is the time when you are confronted for the first time with the possibility that live may be very different to what you had thought it would be. I found coming to terms with this all like a grieving process. took years to accept. She. DD was two, I was obsessed with how lucky my friends with their DC were and how easy everything seemed.

but this will pass. You will adjust. your priorities change. You will find your own way.

One of the best things for me was to join local support groups. there are actually a lot of parents out there in a similar situation . they 'get' it. make contact with them.

and don't read welcome to Holland. utter tripe!

I think you can but it depends on severity of confident, support you have and coping mechanisms.

With a low severity condition and a lot of family support life should be adapted well and enjoyed.

High severity and low support would make life difficulty, I must say.

Oh, fuck that Holland poem! I know what you mean, OP. I don't agree it gets easier, as my child has grown it's got harder. I feel robbed and trapped.

I agree that it doesn’t necessarily get easier as they get older. When they are small you kind of expect not t have a social life and to have sleepless nights, as they grow older you expect to have more freedom but the problems can sometimes be worse because not they are bigger and stronger and people no longer see them as “cute”, there differences are now more noticeable. There seems to be one battle after another, fighting for school places, fighting for respite and the list goes on...
I dread my dd’s leaving school as adult support is even worse . I am a single mum. I struggle and at some point I will have to consider residential for my youngest daughter because I just can’t cope with the thought of her living at home forever (I don’t think she would want to either), so more battles to get residential accommodation and support.

Perhaps you local Autism Society branch could direct you to a playgroup or other activity with parents in same boat as you.
www.autism.org.uk/services/local/about.aspx

It can get harder as they get older. Obviously depends on individual child's needs. My sister has a 15 year old, still in nappies, barely sleeps, completely reliant on my sister. Now he's older and can be quite aggressive, friends & family are much less likely to help out. Respite is minimal.

My sister's life is very limited in all honesty. It's sad.

I hate the Holland poem, it feeds into the idea that we should've serenely accepting of a life (trip) that we didn't expect and didn't sign up for. It's part of the same pile of horseshit that contains such gems as "god only gives special children to special people" and "ah, but you wouldn't change him/her, would you?". Well yes, Karen, I fucking would as it happens!

OP, I agree with a PP, you need a support group for parents of children with ASD. No one 'gets it' quite like people who are going through the same (sometimes literal) shit.

You're in the raw stage at the minute where it's new and you have to come terms with the difference between the child you envisioned and the one you actually have. People will say to you that every parent has to do this and yes, they do, but for us it's a bit more complex than coming to terms with a child who likes rugby rather than ballet and it is hard but it's okay to say it's hard. I am DS' fiercest advocate and I will drop-kick any fucker who tries to treat him like he's lesser because of his ASD but at the same time there are days I could quite happily drop-kick him because some days are frustratingly difficult.

It is possible though to enjoy life with an autistic child, you find your own fun and you adapt despite the restrictions.

I have a 7 yr old with ASD and ADHD. To be honest, at 2 there are a lot of kids who don't deal well with cafe type situations and my DS at 2 had many a meltdown in confined spaces like that. But actually, at the time we were living abroad where people eat out a lot more and are generally more tolerant of children, so we started going occasionally, then increased it gradually, and yes there were many times when one of us would have to sit with him outside, but we persevered and now he is fine in that kind of environment. Although in the early years, we did resort to having him watch peppa pig on our phones, but we ignored the tuts and actually, with time it has become ok and I would say he is actually very well behaved now providing we plan ahead and bring lots of things to keep him occupied and make sure we don't go to the type of place where the food might take ages etc.

There are still places we don't even contemplate going and our holidays, days out etc are to an extent tailored around what DS will cope with (eg length of journey, type of holiday etc) but for the most part, we do what we would have done anyway, but just slightly adapted it. So we still go out, but prefer letting the kids run around in a park as opposed to organised activities where they have to sit for prescribed lengths of time, as this doesn't tend to end as well. But we do still try to do things that are outside of his comfort zone because if we don't try, he'll never get the opportunity to overcome what he may be struggling with.

You can most definitely still have a life, and a good one at that, you just have to alter what you consider 'normal' and find activities that work for all of you. But I would recommend still trying to do some of the things that might initially fill you with horror (eg cafes) and ignore those who tut and shake their heads, because even kids with SN can get used to other situations, it might just take longer.

I think it’s normal to have phases where you accept it and are coping well and then some tiny thing detonates the world.

Yes to this.

We're in a detonation phase at the moment thanks to school being a bunch of unsupportive thundercunts but hopefully in a few weeks months we'll be back on more of an even keel.

I find the constant worry the worst thing to deal with, but then my youngest ds is so much easier to take out now than he used to be.

Sinkgirl, your story about another child saying that their tooth hurt really chimed with me. The lack of communication is so very hard to deal with. Once someone asked me what ds wanted for Christmas and I had to say that he didn't know what Christmas was, or what a present was.

OP it really is a grieving process. It sounds to me like you are grieving for your marriage too So sorry.

The Holland Poem isn't as bad as the one about God only sending special children to special people There is a copy of that up in the local hospital children's centre.

Sending a hug OP. It’s very hard and very lonely.

We’re further on than you, DD is 7 and was diagnosed at 4 years old. Much of the time now, her autism is just a small part of our day to day lives. Her communication has improved, her sensory sensitivities have decreased and her emotional regulation is better. We’ve adjusted to our “normal” life and autism doesn’t impact it particularly.

However, it is a punch to the gut when I see how much support DD needs with her learning at school. How hard she finds it to understand things her much younger brother picks up effortlessly. How the gap between her and peers is getting wider socially.

Basically, as long as look at what anyone else is doing, I usually feel ok. But that’s hard sometimes.

Ew I will drop-kick any fucker who tries to treat him like he's lesser because of his ASD but at the same time there are days I could quite happily drop-kick him because some days are frustratingly difficult I get you. I work shifts. Mine doesn't sleep. I am a horrible tired grumpy cow much of the time and respite is in short supply and at the whim of my ExH.
That daily battle to get shoes on in super slow motion just finishes me off sometimes.

I quite like it but I accept some people do not.

I apologise!!

It comes in phases. Sometimes it’s easier to cope than others.

I always knew I was in Holland, it was the people telling me that I was wrong and this WAS Italy that fucked me off.

Once the diagnosis was made things did get better. Had to fight for every single referral but it was worth the battles.

I think it doesn’t help that there appears to be a lot of parenting “rules” now. Children have to be/act/ look a certain way in order for you to have done an apparently acceptable job parenting.

I think it does get better especially once the children can be themselves and have their own independence and being “special” isn’t all they are.

But yes. Bloody hard.

I have an irrational hatred of Holland now since I was shown that poem. Really, when I was spending my days being asked to leave play groups and parks and ds1 was smashing up the house and ripping my hair out and stabbing me in the eyes. I couldn't find any joy in life I used to walk round the park for hours with him in the buggy while I cried. I spent 2 years fantasising about throwing myself in the river and drowning. But of course I still loved him.

I understand how you feel OP. I now have a NT DD who is 2 and the contrast is incredible. It's a totally different experience I now realise what everyone else had. I dread the holidays when DS1 will be home all day and the whole family is at his mercy. We walk on eggshells waiting for the next explosion altho it's still hundreds of times better now he's 6 than it was before he was 4. I think that age is the hardest OP and for us it did get better.

The best way to cope is to find your people, develop a warped sense of humour so you can laugh at things parents of only nt children would be horrified at, learn to pick your battles and anyone that tells you you're making a rod for your own back get told to feck off and above all, never give up fighting the system that often fails our kids.

I agree, you need some SEN Mum friends. Mine have been a saving grace to me, literally saved my sanity on days I didn't know if I would make it through.

It is hard. There are days when you don't think it will get better but it does. When DS was younger I started keeping a diary of little milestones so that I could look back on it through my worst days and see how far we had come. It sounds trite but it worked.

Where abouts are you? Maybe someone one here can be a listening local ear, or suggest some places you could go. FWIW my DS is 12 now and we still don't get to go to cafes or restaurants.