Special needs parents... I'm feeling lonely, down and exhausted.

[cornishgirl17]

My DS is 6 and has Autism and I have a DD 2 who has physical delays. It's pretty much just me, my other half and the children. Both our families are nearby but they don't really visit and have little understanding of our Asd son. Both my mum and MIL think I exaggerate when I talk about DS's behaviour issues at the minute. I don't really have any close friends and sometimes I just feel lonely.

It's the summer holidays which mean s DS is out of routine and struggling. OH works long hours, I'm a stay at home Mum but I'm feeling incredibly lonely. Me and the OH are both too exhausted to get intimate anymore. We hardly talk without it getting into an argument and the kids can be hard work, as much as I love them, a date night would be amazing. We haven't had any alone time since DD was born. We don't really get evenings either as DS takes ages to nod off and one of us has to lie with him until he does...

I keep seeing other parents. Looking forward to days out, holidays during the summer. But I am stuck in with the kids all day as I cannot manage both on my own in public. My sons behaviour is unpredictable and if we go out as a family at the weekend it usually just ends in an argument because we take our stress out on each other. I have nothing to look forward to anymore. Days are long when you stuck in most days. My children get up around 5am too.

I'm 25 years old and it would be nice if someone would take the children off our hands even just for a couple hours. I've never expected anyone to have our children but it's tearing me and OH apart.

He is an amazing father. But I can't help feel like our sons Autism is driving us apart. I'm constantly running around after the kids, cleaning up their mess and looking after everyone. I have no time to myself and I look like a constant drained mess. I'm sure my OH doesn't find me attractive anymore.

Anyone else feel like this?

Sorry for the long lost. I have no one else to vent to. 😢😢😢

I used to feel like this but it wasn't doing me any good.

I'm sorry you feel this way OP, even though your MIL and your mum are not very understanding, your lucky you have your OH. I am a 23 year old single parent to 7 year old DS and DS dad is not concerned about him.

I know your DS can be unpredictable and make you want to stay in doors but the longer you fear taking your DC's out in public, the longer your going to feel your not able to cope with them on your own. With my DS, I have no choice, I have to take him out everywhere with me.

You need to plan, create a visual timetable (board maker is good) and an exit route. Take small steps to build into bigger ones. As an example, take your DC's out for a walk for 5- 10 mins.... what is your DC's favourite food ? Take them to McDonald's for 5 mins then go back home. Shopping.... take your DC's shopping with you and only buy 3 items...then go back home. It's like you almost need to build self confidence and realise that you can handle any situation. Do the above things ( when your DC's are ok and you feel much confident) but do them a bit longer... when shopping buy 10 things...go for a walk for 15 mins.... etc.

Before you leave the house, give your DC's some rules of what you expect from their behaviour and reward them when they do good !!! DS has a piggy bank and I stuck a picture of his favourite toy which he would like to get...he will then save up ( with me adding the rest of money) and because his done so well he can buy his favourite toy.

Regarding your relationship between your OH and you... There are really good baby sitters that can take care of children with SEN... there are specialist holiday clubs..respite care which you can ask for social services to carry out a career assessment. You both need to come up with a way you both can parent your DC's... I also recommend you meeting other parents/ couples who have similar needs to your DC's which you can share tips/ advice.

Thank you for your great reply. Hats off to you, I couldn't do it on my own. I was a single parent to my son for a few years so I know how hard it is. (my oh isn't his real dad, but is as good as).

We've tried everything to improve my sons behaviour in public. It's not so bad in quieter months but we live in Cornwall, near Newquay if you know of it - it's extremely busy this time of year. I hate busy places let alone my son. Even being stuck in traffic is a nightmare - and there's a lot of it! 😕

Hi CornishGirl

I can relate to so much of your post...

Evenings are a write-off due to extended bedtime- CHECK
Stuck in house as can't leave house with 2 children - CHECK
Relationship with DH strained due to lack of time together - CHECK

Summer holidays are a nightmare.. I can't even go to the local shop, or post a letter. DS1 (ASD - almost 6 yrs old) is totally self-driven, and is a bolter... He won't listen to rules and as soon as we leave the house goes into his own zone where he won't listen to anything I say, usually while running across roads at full speed... We are very lucky we live in a quiet area and I can see/hear that no cars are coming.. but I need to be on my game and ready to run any time the front door is open. Bringing a 2 year old toddler along for the ride isn't happening as I wouldn't be able to run fast enough.

Does your DD attend nursery in term-time? My DH now takes a day off once every couple of months when DS1 is in school and DS2 in nursery so we can spend the day together... cinema/lunch... whatever... A date day... I'm not saying it will solve everything.. but its something I look forward to that briefly reminds us we have a relationship to each other!

Very very similar PunkyBubba. My son has always been a bolter. He also has no sense of danger near roads or strangers or anything. If I take them for a walk - DD has to stay in her stroller as DS is off and she's not fast enough to keep up... doesn't listen to a thing he's told when out and about. We live in a village which is quiet but there's only so many walks around here you can without it driving you insane. A trip to our village shop is a nightmare. At the shop, there is a ONE children's trolley that they can use. Most of the time, we are lucky and it's available and DS fills up his trolley and we leave and that's that. Well... if another child has this trolley... that's when the trouble starts. When he was younger he used to try snatch but now he will wait, but he will refuse to leave the shop unless he's used the trolley. The other day a little boy had it and he insisted on waiting. The little boys Mum was talking for what seemed like ages and I felt awkward stood there waiting. It's little things like that, that people do not get. He needs a go on that trolley, and that's that lol.

DD is due to start pre-school when she's 2 and a half in January so I'm hoping me and the OH will be able to spend some time together. My ex has DS once a month to stay overnight. If DD gets to bed it kind of gives us a break.. sometimes. He is staying there tomorrow but OH will be home late and working early the next morning so it will be just be an early night! 😴😴😴

I wish you the best of luck for the rest of the summer holidays!

I feel for you my youngest DD age 9 has ASD she is high functioning but doesn't have any real friends. She has a small group that she does play with in school times but attempts to get her together with other kids out of school have been pretty disastrous. She is very rigid and copes much better in school where the routines are set in place. My job is term time only and I absolutely dread the holidays. The only thing she wants to do is play computer games and she won't do anything else without a huge struggle. It's lonely and depressing. No help to offer but just wanted to let you know you are not alone

Thank you cowardlycustard. DS doesn't really have any friends either, a lot of the kids around our village okay outside and I feel for DS when he sits in the window and watches them... he plays happily alongside them but he can get boisterous with other children not knowing his limits.

DS also copes better with school routine. I just think he gets bored and the only thing that will keep him entertained for more than five minutes is the iPad...