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.

Ds was given high rate care dla at 2.5 before he’d even seen a paediatrician - so before diagnosis. He’d only been referred to one by the gp. I sent in health visitors reports etc and filled in the form as fully as I could.

He was diagnosed with autism at 4 and his dla was renewed that year and he was given high rate care again, this time until he is 12.

Anyone thinking of applying, do it. You have nothing to lose. Also google carers allowance and let tax credits know if you do get mid or high rate dla as you get a disability element of tax credits added.

DD finally diagnosed at 15. I first raised her "differences" aged 2. We've had a formal apology from camhs for the multiple missed diagnosis points. Not going into any more detail.

I hate that fucking Holland poem and the whole star child shit.

DD is an adult now, all I can suggest is seek out as much self help and support as you can. Make a lot of noise and get every single bit of help you can.
Take up every offer of support or councelling or respite or whatever you can.
Get a lock on your bedroom door, headphones so you can have 10 mins meditation/quiet time/ whatever.
Seek and press for and demand (you will have to!) every single bit of support from Child Services/CAMHS/Adult Social Care etc etc
Join any and every support group locally, NAS etc.
Good luck.

Meinekinderwreckenballenotherkinderwellbehavensheizemutterheartenbreaken

Genius

No advice or words of wisdomOP but just wanted to wish you and your lad the very best. 💐💐 I hope you manage to find some more support for you and your son. Hopefully you can find some local support groups and start to build some sort of social life. I’d imagine feeling isolated must make everything feel a lot lot worse.

I think the lack of support for families with SEN children is shocking.

I have a 5 year old and a 3 year old with ASD. We get DLA for both - wish we'd applied earlier for eldest. Getting him into the right school for his needs was our biggest fight so far but it was so worth it as he loves it and has just started talking in the last 6 months.

We are just starting EHCP process for the youngest. Easier as we know what to do. Harder accepting that you have two disabled children.

We get pleasure now from every tiny little bit of progress they make. Sometimes I think I sound crazy celebrating my 3 year old starting to babble again! We have just found riding for the disabled who are fab and it's great that we can access some activities.

We get pain from unexpected directions sometimes. One thing that upsets me at the moment is that my eldest hasn't had a single birthday party invitation from his class. Objectively he is only in his class half the time as he works in the attached unit too but for some reason it really gets to me.

I hear you OP. I have a four year old DD with ASD and I honestly find it exhausting.
I'm ground down by the constant phone calls from school, the meetings, having other parents approach me in the playground as their children tell them about some of my DD's quirks and me trying to explain and shrug them off. The meltdowns as ages going into school as her teacher wearing glasses upsets her.
I hate being corrected about anything and everything. The refusal to only do what she wants to do. I have to watch the same programmes over and over, read the same stories over again.
I worry and agonise about taking her anywhere new and end up apologising for her behaviour. I feel desperately worried about her when I see the other children rolling their eyes at something she's said. My heart breaks when I take her to dance class and see for myself the differences there are between her and even children quite a bit younger than her.
I feel terrible that I'm so grateful that her younger sister is NT and that everything is easy with her when I've struggled so much with DD1.
I feel very lost and low about it all at the moment. No words of advice but you are truly not alone

I like the Holland poem, it brought me some peace of mind

I like bronze’s post it accords with my own experience. You can move the needle on some of the stuff that’s restricting what you can do, but it takes thought and patience. The payoff and satisfaction is huge though,
Things will get better and you will find many friends here.

I like the poem too.

I felt wretched for the first 7 years of my son's life. I cried a lot, felt lonely in his company, was hit, spat at and verbally abused by a child who knew every swear bar one by the age of 6.

I feared I would physically attack the next person who asked 'But where did he learn those words?'. Turns out my child's Autistic super power was swearing. Ffs.

I cleaned up a lot of poo and wee. I didn't do anything with my two other DC because ds didn't want to get out of bed and was frightened to walk down stairs without a chaperone.

I couldn't stand people who got all misty eyed about 'special disabled kiddies' and told me I 'must be aspirational for my ds and make sure he achieves his potential', when in reality, I just wanted him to stop screaming and walloping me.

And then, following 5 years of counselling and sobbing my heart out, we sort of found each other and have worked out a life together. He really does make me laugh and I admire his ability to never relent or change. He is strong, outrageous and lovely.

Op, you will find a life together with your son, where you can both do the things you enjoy. It may take a few years, but it will happen, I promise you. It will get better.

@HumphreyCobblers I think we may use the same children's centre (unless more than one is crass enough to have that tripe on the wall ) - is it a large cross stitch version by any chance?

OP - it sucks. My DS (8 yrs old, suspected ASD and ADHD) has challenged me and my expectations of parenting in so many ways. BUT the moments of peace and calm and joy do come. You do find your ways to make life livable. And you do develop a thick skin and a fuck you attitude towards anyone who tuts like my bloody mother

for everyone struggling. It's shit sometimes.

My eldest is 12 this summer and my second is nearly 8. Both sen. I'm currently juggling paperwork, appts, meetings. Its been this way for some years for one reason or another but theres also been several house moves which have delayed things.

Both have many similar issues but eldest was doubly incontinent until a few years ago. For reasons, this really affected the continuation of my bond with her. And her vacant look-through-you stare too.

Problems aside, she's currently this quirky, factual, moral, hilarious, unique, robotics-obsessed pre-teen. Since starting secondary, her needs have been noticed without my direct input and she's currently being assessed for an EHCP while we wait for her ADHD and ASD assessments.

Her senco has been wonderful. Ive repeatedly broken down this year, and Ive been allowed to blurt all my feelings down by email to the senco who has read without judgement and responded so kindly.

She says mourning what we expected parenthood to be, is normal.

We struggle as a family when it comes to playdates and having to interact with other parents and children. For years theres been stigma and confusion.

There will be support groups in your arra where you can go, diagnosis or no diagnosis, to talk to other parents and helpers who know who you need to speak to. Your dc can mix with other non nt kids and its less worrying. People know to expect behaviours etc.

I think it’s very different here from the US. There, the attitude seems to be that whatever the behavioural issue, it can improve, we can make things better for the child and his family. Here the attitude is much more pessimistic. But my experience is you can improve things and make everyone’s quality of life better. You need the right support tho and it’s very hard when the education and support systems are all about low expectations.
It’s a good idea to find other parents in similar positions and exchange wisdom. I would endorse that wholeheartedly.

Dla isa godsend, I never knew I could apply before mine was diagnosed. He has very limited interests and we've gone through a few anyone want seventy trillion pieces of Lego? and what's left of his dla after using it for laundry, he's still a bedwetter at 14, goes on his hobby which is very expensive because he breaks things often. But said hobby makes him very happy, without dla we could never afford it.

QuirkyQuark you summed it up perfectly!

After my youngests 10th (or 11th I forget?) I figured I don't want to be a fucking ninja, I've had enough! Ti the people who ask kindly how do you cope and say "I couldnt do it"
They can Fuck off too some days I don't cope and some days I don't want to come but i do it because I have to, what choice do we have?

That should say 10th or 11th brain operation!

@HumphreyCobblers I think we may use the same children's centre (unless more than one is crass enough to have that tripe on the wall shock ) - is it a large cross stitch version by any chance?

Yes it is! I actually complained about it and was told in very embarrassed fashion that it had been made as a gift by a very elderly grandmother of a patient and that they knew it was a bit off but they didn't want to offend anyone.

I think the very worst thing that anybody has ever said to me (the same person who spouted the God giving special children to special people tripe) was that the world needs children like my son to remind everybody else how lucky they are. When I had calmed down enough to say that I was appalled that she could think that way, she replied that all was fine, as he wouldn't have to 'suffer Purgatory' and would go straight to heaven. I said he was in Purgatory now...

i understand your feelings but i don’t agree at all.

It was very good when my son was 2 and it was all new but he’s nearly 4 and diagnosed with autism (he’s non verbal) and i have a great life. We go to the beach, park, coffee with friends who also have autistic children at outdoor coffee shops.
I think finding friends with children who are also autistic was VITAL in making me feel less alone. It gave me someone to rant too and that i didn’t feel like i needed to hide my sons behaviour or feel even a little embarrassed when he has meltdowns in public.

It’s very hard at first with all the referrals and appointments but my sons now got his diagnosis and is in an SEN pre school
and we have a chilled life most of the time.

It always going to be more stressful then those with NT children and it can still get on top of me sometimes but it’s mostly wonderful.

(also my sons been getting DLA since he just turned 3)

F

Thankfuck that's great for you but your child isn't even fouryet and in an Sen school. Some of us, due to the powers that be thinking hfa means they have less difficulty, end up with our kids in mainstream school, getting excluded because they can't cope in said mainstream school.
Then you also have to cope with a teen, that's grown taller and stronger. When they have meltdowns they're on a new level of scariness due to their size and hormones.
So whilst ithink it's fab that you're coping well, some of us aren't at all and we are allowed days of wallowing in self pity.

For some people things can sadly never settle down. The whirlwind of appointments and battles becomes “normal” and that’s aside for the actual challenges which come with the parenting side of things!

Thankfuckitsfriday1 your child is still very young. It is an entirely different when you have an older child or teenager having meltdowns in public places and you can't just scoop them up and carry them off. Where you can go can be very limited and also some children with asd can't cope with being around other children.
I'm glad life is good for you but it isn't like that for everyone no matter how much they might want it. People usually settle into their own pattern of life but frequently it isn't a typical one.

Ignore the welcome to Holland poem.

You just need more support that's all all children are gifts wether they have SN or not it's all about adapting that's all, try and get in touch with mum's and dad's in your area with children with the same SN. In the meantime seek out some help and support from your GP.

I agree about having down days, we all do (i in fact had one yesterday) when i felt all those same feelings all over again.

And you are all correct i don’t know how hard it’ll probably be when he’s a teen but my main point was that i do get great enjoyment from our life with our SEN son
(so far). And that was the title/point of the thread. It didn’t meant to come across holier then thou and i struggle too and feel like i live in a heighted state of stress level but i do love it regardless.