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.

I've got a 12 year old with autism and sld. My view is that it is very different life and for much of the time it is hard work. Partly the looking after someone taller than yourself and going through puberty but having the understanding of a young toddler and partly the continual fighting for everything and partly the worry about what will happen in the future.
For us it has not got easier as he as got older. We have peaks and troughs of difficulty. There are good days and I think having my son has made me grow as a person. It has made me realise that you can't plan life and all you can do is get on with it the best you can.

Thank you for all the replies and the understanding you have shown.
It makes me feel a lot better to hear from other people who get it.
Although it makes me sad to hear of other people's struggles as I know how hard it is.
I think you're all so great and strong! You've done a wonderful job to keep a positive outlook.
I will check out the SEN board.

The Germans need to invent one of their brilliant words for the feeling you get when you go to a group and all the kids are playing nicely and yours tears in, smashes up the place, injures other children, squeals loudly and all the other parents look at you like you are the shittest parent ever and you are so tired and lonely you just want to sit down and someone be kind to you for a small time but you chase after your dc trying to do supernanny tactics, which clearly don't work at all and you know it, but you're doing it more to show everyone else that you are trying, you really are but for some reason the kids books don't work and you catch sight of all the kids just quietly colouring in and something inside you dies and your heart breaks.

Something like:
Meinekinderwreckenballenotherkinderwellbehavensheizemutterheartenbreaken

Crikey that poem would annoy me if i had a child with SN

I have a child with severe learning disabilities and it irritates the hell out of me.

I sometimes think about having a second DC but I'm so torn. It's such a hard decision to make knowingly when you have a SEN child.
I'd be terrified my second one would have SEN too.
Or that even if they were NT, I'd be struggling so much with DS that I wouldn't be able to cope with a second child.
I also don't know if it would be unfair on DS to have a second when I know DS is going to need more support than normal.
It's things like this that I find make the future look bleak. I guess it's because at the moment I'm unable to let go of the "perfect" dream.

MrsKoala that is so accurate and relatable! Love the German you've chosen for it.

Sometimes like this morning when my ds started shouting and laughing at the top of his voice before 5am and he'd also had a accident in his room . My ds is 15 and he needs 1 to 1 care so I can't leave him unattended . There are other times when he brings me a lot of joy like yesterday morning he came to wake me and kissed me with a lovely big smile so those moments are lovely .
I think it's about adapting and you get used to life . There is always someone worse off as I say , but yes I understand it can get you down at times .

I have a big gap between my SEN son (now 18) and my daughter (now 7) and for the most part, it’s worked out really well.

My daughter seems to be NT but was diagnosed with a random, rare, life threatening illness aged 6 so i’ve been pitched straight back into special needs parenting for a second time (albeit in very different circumstances).

There is no way to prepare yourself for the unimaginable - but I’ve been into the upside down and witnessed parents dealing with the absolute worst and you know what? Somehow, we manage. And there is so much love.

There have been times when I would’ve happily left my eldest under a gooseberry bush, but genuinely, honestly, my children have made me a better human being.

Hi I recall things at your stage being very very hard but I am one of those who would say things have got much better as ds has got older. He is 12 now and in mainstream school. Unfortunately he has no friends and hates it, and supporting him and trying to improve that (and accepting the limitations of what I can do) is hard. However our lives are nothing like as restricted as I feared they might be.
One thing that helped when ds was v small was improving his ability to cope with certain situations via graded exposure. Eg the noise of the Hoover - at one stage I could not even get it out much less use it while he was in the house. Ditto hand dryers, lawnmowers- all v difficult if you want to go anywhere (or clean). Now he still won’t go outside on bonfire night but he can cope with all common loud noises. We started with just reinforcing him for tolerating the Hoover on for two seconds upstairs while he was downstairs and built from there.

it would be worth asking for genetic testing. we had it too! sometimes, they find a specific genetic mutation which causes it all (DD has one). they can then test you to see if you are a carrier or not. This would give you some means to make an informed decision about a second child.

Get respite
Get your child into nursery or ask ss to fund trained childminder
Get gp to write in support
You don't have to do it all 24 7

More than anything I feel sad for the life my daughter is missing out on. I worry about her future as she becomes more isolated.

I usually have a good week - 10 days when I think "oh, its not thatbad, I can do this, and then it usually descends into shit in a basket for ~2-3 weeks which usually coincides with shitty school updates, running around for paperwork, appointments etc

A lot of the time I feel beaten down, especially when on the constant receiving end of screaming and tantrums etc and its hard. I have no answers as to what makes it better, altho the SN boards here have been a lifeline, as there are other people who 'get' the highs and lows.

That bloody Holland poem can go and jump in the sea though, for all its trite tweeness

Haha to "Welcome to Holland". I read that poem in 2001 when I was a Student Nurse in a burns unit, and I found it mesmerisingly beautiful, touching, and poignant. It genuinely moved me to tears, when I thought of changed lives, realty Vs expectation, etc.

Then, I read it again in 2006, after my DD1 had been diagnosed with SN, and I thought "I don't like this at all!"

It's hard at first, and has ups and downs. I have 2 DDs with SN now, but they are fun, too. They change as they grow, too. DD1 has become more able to sit for periods of time, but she's also very strong willed now. DD2 is getting to know herself, which helps.

DS2 has autism- we’ve just done assessment and are waiting for the diagnosis but it’s all but official. He’s 4 and starts school in Sept, still no word on whether he’s going MS or SEN school. It’ll have to be SEN school, his hyper mobility means he can’t even open lunchbox/lunch bag by himself FFS.

It can be really hard some days. He brings DH down a lot. DH is his favourite person in the world, but he gets both extremes of his behaviour, more affection but also more physical aggression. It’s always up to me to really insist on going out and doing things as a family, because DH finds it so stressful but if we stayed cooped up all day then DS2’s behaviour would be worse. And it wouldn’t be fair not to take him to the park and things he likes.

I can see where you are coming from and 2 isn't an easy age especially with no support from your DH. Mine is 12 with suspected ASD and I think he's wonderful and wouldn't want him any difference. The endless appointments are annoying and a challenge to work round and so many of them seem pointless form filling exercises repeating the same time for the umpteenth time.

But I love how excited he gets about things, how our holidays are now seeking wildlife in rainforests or bears in the wild as I have to think beyond what an NT child would love. I love how he's always worshipped me, how he loves to cuddle and needed one every 5 minutes up until 8 or so, how he sees some maths and jumps up and down. They are all different though and some are much more challenging.

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 agree with this. I think that is what grief is like. It's not linear, it doesn't get better and better each day. It's so up and down, an emotional rollercoaster.

My DS is NT but was diagnosed with a physical disability as soon as he was born. It was unexpected and understandably I was devastated for many weeks afterwards. I still feel robbed of the newborn stage now because I was an emotional mess. He's now 18 months and for a number of reasons, the past two weeks have been so upsetting, I've cried many times most days. I feel almost as bad as when he was first born.
But I can't talk about it in RL as no one gets it. They see a happy toddler but have no concept of how emotionally draining it is to come to terms with a different future, and I get triggered by repeatedly seeing things he will miss out on, and other families with their 'normal' babies.

I've decided I need to get counselling. I need to break the cycle of grief I keep feeling.

to anyone struggling too.

Laugh at things parents of NT children would be horrified at
So so true. DH and I have a very warped sense of humour about the ' bad' behaviour of children. I tend to treat all the ' panicky' posts about ' my child had a detention for messing around in class/ calling out etc' and I am so mortified' with a lot of inward eye rolling

Try dealing with several incidents a day of aggression,shouting,hiding under desks, freezing, rolling in a ball on the floor, emptying buckets of water over other children . Then add to that at least 4-5 incidents of angry parents of other children shouting at me, ds,.DH etc.( Not that I really blame them tbh) in primary school. Primary was horrendous for us.

Things have actually got a lot easier as DS copes.much better in secondary than he did in primary. ( Much to our surprise) and he is no longer at all aggressive. It is even a mainstream, large, scruffy state school. He doesn't love it and it is not perfect but he is doing quite well there overall.

Things can get unexpectedly better sometimes so.hang on in there Op. Other parents in the same situation are the most helpful do do seek them out.

I strongly suggest you find your local autism support group, there will be one, where parents understand and support each other. Does his father ever have him, if he does that can be a great boost. My ex won't have any of our dc overnight, I have three with autism and also no family help. I know what you mean about lack of social life, that really does wear you down. You look at your do and they are wonderful, but you still need a life for yourself. Parents of NT children expect to have a social life, yet us parents of children with special needs are expected to find all our joy in our children. That's a recipe for a mental breakdown.

I'm saying its a recipe for a mental breakdown based on my own self by the way. Not on anyone else.x

I was already pregnant with DS2 when DS1 was 15 months old. So the true horror of how DS1 would develop over the next 2 years hadn't hit us. As he was our first a lot of things which 'weren't right' weren't picked up till later by us as we thought it was 'normal' (both dh and me are only children and hadn't known anyone with a baby before us). It was me who started seeing it at toddler groups when he was 18mo and by then I was expecting. Then we had dd when ds1 was just 4 and ds2 was just 2.

If i'd have known I'm not sure I would have had anymore. But then again I am also stubborn and refused to accept this was going to be my life. I felt a righteous indignation that it wasn't fair and that we all deserved to be happier. I also have had a fierce belief that I will not let ds1's difficulties chuck the rest of us or himself under a bus and we will fight for everything.

Some people have said to me ds1 is unlucky to have the combination of complex needs he has. but I have always argued that on the contrary he is lucky. He is living in a developed western society which understands these issues more than a lot of other places he could have been born. And more lucky than that he has me as his mum and I will go to hell and back every single day to get him the very best help he deserves. He will not be left behind I will make sure of it, as god is my witness

I also f*cking hate that "Holland" crap. About as much as I hate the "God gives special children to special parents" BS.

I hope things look up for you soon OP. I know how isolating life with a SEN child can be. My son is 14 now and (touch wood) is doing really well in mainstream secondary with fab learning support, but we've certainly had our ups and downs along the way. Life isn't as I anticipated it being for any of us - least of all for him - but we can now go out for days and we share some interests so that's all good.

Don't worry sizzledrizz, I thought I was having a mental breakdown today!

My DP does try his best, but I can see that he is unhappy and not coping very well either. It's hard to try to support him and make him feel better when I feel just as bleak too! He works full time and has started going in early and staying late to avoid DS. When he is with DS he does try but he has very high expectations and sometimes I think is in denial about how DS is, so tends to set him off by trying to force him to be "normal". That then leads us into arguing and it turns into a right mess. But at the end of the day I can't blame him as he's suffering with it just as much as I am.

I was in a very similar boat five years ago. DS is now 7 and has ASD. Both he and his NT older sister were hideous toddlers and I had severe depression too. He was too violent to take anywhere. It was fucking awful.

Some things that help(ed) me and might help you:

1. The meds you're on sound like they don't suit you so I'd go back to your GP and try something else. It took me 20 years to find the right treatment for my MH issues, partly because of my own 'better the devil you know reticence.

1. This book: Autism: How to raise a happy autistic child www.amazon.co.uk/dp/1409176282/ref=cm_sw_r_cp_apa_i_0uRFCb7QKXB24?tag=mumsnetforum-21

I'm not even halfway through but it's already transformed my thinking about autism.