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.

To be very honest , I've had 10 years of relentless anxiety.

I have 2 dc that likely have adhd. It is exhausting mainly because there are 2 of them and they set each other off.

But also it brings home to me how far from normal we are when dc2 has kicked off twice this week 4yo and refused to move on the school run, needing to be carried.
But now im incapacitated temporarily and she cant be trusted to not run off etc it's so stressful.
And for us school has actually been worse due to behaviour, inattention etc.
We can go in a cafe but at 2yo ds would just decide he was leaving and run off out the door.
I feel im literally trying so much harder than other parents but it feels like other parents think im useless.

But at the end of the day I can't blame him as he's suffering with it just as much as I am.

sorry OP, but you both need to grow some balls. I know it is tough, it is shit (I have been doing this for 11 years now without support) but you need to change your mindset away from this victim who is suffering.

Things are tough for you but trust me, they are much harder for your DS!

Loving that phrase MrsKoala - German somehow manages to nail that in a way English just can’t 😂
We’re waiting on an asd assessment for DS2 (5yo). He’s verbal, bright, funny and rather charming but his meltdowns are violent and explosive. He’s been identified as having sensory processing issues - sensory seeking, apart from noise which is a massive meltdown trigger. Also ironic, since he’s easily the loudest kid I’ve ever met! The slightest most unoccupied thing can trigger a meltdown of epic proportions.

Nursery was tough, he was a biter and somehow always ended up hurting himself or others most days. I’ve carried him out of more places than I’ve had hot dinners so now we just don’t go to a lot of places. He’s regressed in terms of coping ability and sleep since starting school and I can see the gap between him and his peers widening.

I feel bad for his nt big brother. There’s many things we can’t do as DS2 can’t cope. He can’t play with his brother how he’s like because he just can’t do that. We struggle going out as a family so one of us takes DS1 somewhere while the other is home with DS2, who then has a meltdown because he’s gone and he wants to be with him even though he won’t cope if he goes too. 🙄

I can’t take DS2 to a cafe so I bring the cafe home - I get nice cake for us all and sit with my coffee at home. Ok so it’s not the same but at least we can enjoy the nice cake! At least then if he decided to launch the cake at me I’m cleaning it off my walls, not the cafe walls and I’m not having to apologise to a bunch of tendons who are all sitting judging my parenting. Nobody has ever said anything to my face so maybe my resting bitch face is better than I though!

Really butteroff33, I am pretty sure the OP knows that. It is part of the pain we all feel on behalf of our children. I am entirely sure that the OP is doing everything she can for her child.

I spend my entire life thinking of ways to support my youngest ds and manage his needs. Doesn't mean I don't need to express my grief sometimes.

OP, when I was where you were I'd have agreed.

Many, many years on, a thicker hide grown and learning how life works best means that we have some lovely times as a family. It's not to say we don't have challenges too, but there is light and shadow.

Yeah. Hate welcome to Holland too.

Bunch or ransoms ffs. DS2 is sitting on my knee playing/pulling my hair while I type. Not great but it’s keeping him calm for now

Wish I could have him for you for a few days because it's obvious that you desperately need some respite right now. I literally shudder when I remember the early years with my Asperger's son. All I can do is promise you that it gets easier & that'll begin when he starts nursery.

You'll also find a lot of joy because that lad is going to be your lifelong, number one fan. My son is 15 now & there's no one I'd rather spend time with. I've spent a lot of time coaching him, practising therapeutic parenting & persevering with 'normal' things such as days out & holidays. I've cried with so much frustration & exhaustion but I honestly now believe I'm far luckier than every other parent on this planet. I love his quirks, his routines, his no nonsense approach, his analytical mind & the way he never suffers fools. I could gush about him all day.

You're in for a Rollercoaster of a ride but my goodness, it is so worth it once you really tap into there & understand him (which you, & probably only ever you, will do) you'll adore him & wouldn't have him any other way.

Find some good, supportive groups, accept all & any help you can & celebrate every little victory, even if it's just getting him to wear a different t-shirt one day. Your boy is so special, he just needs to grow up a bit & be guided by you to bring all of that 'special' out. I know it doesn't feel like it now because it's such hard work but it WILL get easier & very rewarding.

Sending much love to you.

Thank you Bronze that was a very kind message.

Have you applied for DLA yet? In my area you can self-refer to portage which I did and got started months before we would even have been referred. They have opened up a lot of things for us, helped getting them sorted at a nursery, etc. Even helped me fill in the DLA forms for one and will also hopefully help when I apply for the other shortly.

Can I apply for DLA before a diagnosis? I wasn't aware of this.

OP - I’ve not read the entire thread but I know how you feel - I absolutely hated parenting my son some days from 18 months to about 3 and a half. He was difficult and obstinate and whilst he was lovely at times the whole experience was draining.

However once home hit 4 ish he changed massively - his communication improved, he became more independent and he is truly a joy now.

He was diagnosed with ASD at 5.

Honestly, just keep going, do everything you can to cope and see how things go.

It’s hard and I know I don’t know how severely affected your son is, but the way he is now isn’t necessarily the way he’ll always be.

My son refused dress up and imaginative play for years. Overnight he’s decided he’s Spiderman. It sounds trivial but the little steps like this are massive for parents like us and very rewarding when they happen.

Yes dla is needs based not diagnosis. Any reports you have will help though.

If you do apply use the cereba guide to help with the form

Yes, you absolutely can - it’s based on care needs rather than diagnosis, but you do ideally need written evidence from someone (have you already seen a paediatrician and got a report?). I sent the initial assessment from portage and from the paediatrician which were both very detailed, plus his portage worker wrote a statement. I used the Cerebra guide to help me fill it in and we got middle rate care with no problems - he wasn’t diagnosed with ASD at the time, he does have other diagnoses but I don’t think they would have gotten it since most of his care needs relate to what we now know is ASD.

Sorry Sirzy, cross posted!

I’ve got three kids and the younger two (9 and 6) have asd, adhd, hypermobility and one has an autoimmune disease. When they were younger it was very very hard. It’s easier now but still tough in many ways. I can’t work, holidays to a degree are limited and life is hard. My six year old can’t speak and when he’s ill he can’t tell me. I’m very lonely and spend most of my week alone as we live in an area where there aren’t many support groups. I’ve fought with the school and thankfully my youngest now goes to a specialist school. This isn’t the life I wanted at all. I know my kids struggle and I hate it. I feel robbed of my aspirations and I worry about their future. It’s also very very hard seeing people with neurotypical kids. There problems on the whole seem like molehills to my mountains. Had I known before I got pregnant with my youngest that my middle child had autism I’d have reconsidered a third as I’m spread so thinly. It’s a hard life. At points we jog along until the next hurdle.

I second support groups and the Sen board (I could really use some online friends).

I also think that Holland prose is complete garbage.

Gain as much support for yourself as you can. Even online as at least even in virtual reality those people will get it.

You can ask your local council social care department for a carers assesment for respite. I get three hours per week for each of mine (I have three), which I can use once every two weeks for 6 hours or save up for holidays. You either can have have a personal assistant for the respite or use a service such as Hop Skip and Jump (Lancashire area).

It does get easier when they are in school/nursery too (apart from the complaints from both, but those can be amusing). Apply for an EHC before your child goes to school yourself (its easier and less hoops to jump through).

I found that going to lots of courses on autism helped a great deal. You end up talking to other parents in the same situation and work out which behaviours aren't worth worrying about too much.
My youngest (at age 4 but the size of a 6 year old and the understanding of a 2 year old) nearly got banned from a soft play last year, during a special needs session he actually made a smaller child's nose bleed as they decided to go up the slide when he wanted to go down. He's somewhat less likely to injure other children as he matures and we are getting more attuned as to what will set him off. While they are very very hard work, we have a lot of fun. I think they are cuter for longer than regular children. Getting interested in whatever they are interested in and going the whole hog with it helps a lot. My house is taken over by Thomas the Tank engine, Lego, electric fans and Roblox.
I don't bother with coffee shops much now we have a Nespresso machine anyway!

I would love to have another baby but I don’t see how we can. I’m already 36, with endometriosis, we really can’t wait around to see how their needs pan out over the next few years. Twins are hard enough, let alone twins with additional needs, and who knows whether another child would have the same issues. It’s currently a real issue for me but I know that part of the reason I want another baby is to experience all the things I never did (eg not spending months in nicu and everything else we’ve had to deal with), but there are no guarantees of that. It’s one of the things I’m struggling with most to be honest.

My child is NT but has a disability and the appointments are soul destroying. People kept saying to me oh maternity leave is so dull, you don't speak to another adult for days! Not when you have the heart clinic, the audiologist, teacher of the deaf and speech therapist all in one week I'm afraid.

Welcome to Holland can fuck all the way off.

Huge hugs, OP. We’re in (I hope) the worst of it at the moment and it feels so, so draining and lonely.

I second what everyone else says about finding some other parents who know what it’s like. Very few of my friends with non-disabled children really get it, and neither do my family. Having friends you can let off steam with (and also support when they’re going through tough times) is invaluable.

And definitely investigate all the help on your LA’s local offer page. There may be playgroups and other activities that you haven’t heard about. I found SEN playgroups a million times more relaxing than standard ones because everyone understood.

And definitely claim DLA, so you can get funded nursery hours. I’d have gone stark, raving bonkers without them.

Can I apply for DLA before a diagnosis? I wasn't aware of this

DLA is based in care needs. you have to demonstrate that your child has care needs well over and above a child of the same age without this additional needs.

so a word of warning - at 2 it is harder to get. All 2 year olds will need constant supervision, help with dressing, help with toileting and/or nappy changes etc so get help with the form as it is a lot harder to show where the extra care is coming from as opposed to a e.g. severely learning disabled 7 year old.

It's hard but in time you do find your way. You'll find some new friends who have children with sn and get it. Your current friends will be a mixed bag some step up done step away. And you will adjust. The grief stays but it gets less intense. And you find new joys.
Also for many that bit until about 5 years old is utter utter pants. The SN board on here kept me sane. My dd is 9. If anything her disability is worse than I feared at age 2. But some of the joy I hadn't expected. Although there is nothing like serious disability to weed out the bullshit from your life. Painful process tho

I applied for a form on their 2nd birthday - people do say it’s harder. I wrote a comparison table to his twin, which has since become terribly ironic because his twin also has ASD and also needs more care than a child his age.

Look at the EYFS stages for what a typical child should be doing, so it’s easier to demonstrate the additional care needs. You only need to get lower rate care to get the free hours (and a top up on tax credits / universal credit)