For those with SEN child how much do your family help?

[HoppingKangaroo]

We have an autistic 4 year old son with a language delay and issues with his behaviour. These have improved and he has stopped things like the head banging and mostly stopped hitting me. In the past he had no sense of danger and you could not leave him alone at all and taking him places was difficult. The last few years have been difficult and quite a slog and I have barely got any rest away from him.

The only rest we get is when my parents visit every 2 weeks for 6 hours on a weekend. He gets 15 hours at preschool but there are problems with that due to his behaviour with others as the preschool only have funding for 10 hours of one on one. Without these breaks I would have went insane by now. Me and my DH have not eaten alone in a restaurant since before DC was born.

My inlaws are no help at all and barely see our dc and barely give him attention when they visit. They also try to make demands on our very limited time. Due to this my opinion of them has drastically reduced alot and I frankly resent them.

How much do your family and in laws help. And if they are no help and judgmental how do you feel about them?

My parents and ILs only helped out in extreme emergencies. DD had profound and multiple disabilities and uncontrolled epilepsy. DS was born 2 years after her and was always a difficult baby and was diagnosed with ASD at the age of 6. We didn't live anywhere near our family so it really was only on rare occasions that they helped (eg DD in hospital so they helped with DS) - they were getting too old to cope with the complexity of our children.

Only DH and me can cope with our son now. When he was younger my parents did have him with his sibling for overnights occasionally to let us get a break or dinner etc and we used occasional paid babysitters for dinners out but as age progressed and his level of need became more apparent, this is just no longer possible. They just can't manage physically.

I feel lucky that DH is very hands on and we cope with DS 50:50 giving each other breaks away with friends etc. and sharing the lack of sleep burden.

Also, and I know this may not be possible for everyone, we both made career changes following covid to fully work from home and adjusted/aligned our schedules to have regular lunch dates during the school day (he attends a special school full time school hours). This has been a game changer. Perhaps something to plan for in future for your own well-being if you can find a way.

.....this thread makes me appreciate my family and in-laws so much.

My 7 year old DS has ASD and is nonverbal as well. He also has SLD and SPD. I also have a 1 year old. Like your son, OP, he’s come a long way but still needs eyes on him 24/7, no danger awareness and he isn't toilet trained.

My family have DS Friday - Sunday every two weeks, in-laws have DD Friday - Sunday every two weeks. In-laws take the kids to the park or out walking or swimming. If I need someone to watch the kids I call them or my family.

DS is in a special school and has just improved his quality of life so much. Smaller classes, more classroom assistants, therapies on site. We pay for him him to attend special needs after schools clubs and schemes, it's helped his social interaction in that controlled environment and I don't have to worry about other kids making fun of him because he’s different or loud.

None at all. Both my parents have died and my mil lives over 3 hours away.
we haven’t spent a night away from our kids except when ds2 was born.
It can be lonely and I’m not going to lie that I am envious of people with family support.

We've never had any help from the family, but we get plenty of judgement and 'advice' which is extremely annoying considering they've only chosen to see our autistic DS once in the past 3 years (they are local).

I have a Foster Son with moderate learning disability, developmental delay, a lot of autistic tendencies. My dh and I manage him between us but it takes 2 adults to deal with him evenings and weekends. My adult son often takes him out to cinema, McDonalds, bowling or he will have a home movie night with him on where they eat popcorn as n dd ice cream in am ex generally watch a Marvel movie whilst DH and I pop out for a meal together. I think 1 person would really struggle with him.

Ds 4 has autism and GDD and we have an older dd too, we don’t get any help with childcare or get any time alone but my family are lovely and supportive in other ways.

My 4 youngest dc are Autistic. All in specialist schools so considerable level of need.

I'm a single parent.

My family don't help at all. Never have done. They can't cope with my dc.

And in an extreme emergency they will help out

My dd is 14 and severely disabled. She has a chromosome disorder and a lengthy list of things that come under that like epilepsy, autism, etc

My parents are both dead and tbh I think they would be hands on if they were alive and healthy.

I have a few siblings some here some in other countries, none of them help out, they've never baby sat, never taken her for a few hours. I spend 80% of my life in hospitals and therapies with dd and they have never once helped, asked if I needed help. I have other children, so maybe they feel I'd plonk the lot of them on them. Dh through out the years had to arrange time off so that he could be with the other children while I attended appointments, a lot of times I had to bring all my kids.

Dhs family are the type to keep saying, ask if you need help, we did a few times and actually caught 2 out lying about where they said they were, when they told us they were otherwise engaged to help. They've been in our home a handful of times, one sibling has never been in our home.

We see people at weddings, funerals, birthdays etc they are all over us, always promising to call, visit, help etc they are all lovely to dd and make a real fuss of her so I don't think it's meanness that they don't want to help, probably more that they don't want the hassle, although they all never helped either when my other children were young.

Tbh I don't ask anything of anyone, I manage with dh and now my kids are older they are great help. Dd goes to a special needs school so she gets lots from that.

At age 4 hardly ever, beyond a lift to the hospital. Or mil turning up, other grandkids in tow to "help" me and do a job that didn't need doing - like the ironing when I'd done most of it the previous day (because I didn't know she was coming) and leaving me to entertain other grandkids.

There would be plenty of offers to babysit- if she had an audience to hear her say it. The audience all thought she was marvellous. What they didn't know was that her offers were worthless because if we did ask, the answer was almost always "no"; occasionally she would say "yes" then cry off at the last minute.

Zero.

My son is never not with me or his dad. He is with us constsntly.

It's hard but I know this is a particularly tricky phase, he is 3.5, non verbal autistic

Our families are nice enough but not much help in an emotional or practical way (although my parents have helped us financially a great deal and they did have DD a day a week when she was 1-3). To be fair all the grandparents are 80+...we left it a bit late.

DD is quite able but it would be good to be able to talk honestly to our families about the difficulties of having an articulate, sometimes violent child who can say and do horrible things when disregulated. And if they listened properly.

You do learn who your real friends are for sure.

None. I’ve not been able to leave him with anyone for over 20 years due to behaviour.

Not at all

This is just nasty.

The OP clearly states that GPS don’t try to engage with DS much at all, it’s not just about babysitting.

And when it comes to families with disabled children, the parents killing themselves with decades of unrelenting broken sleep, daily dealings with violence and aggression and lack of any time for themselves are saving the taxpayer millions by doing the work of half a dozen people who would otherwise be needed to look after the most vulnerable members of our society.

It’s in everyone’s best interest to support people with different care needs. We all know the phrase “Who cares for the carers?”

God forbid you ever become old or disabled yourself (especially if you ‘cause’ your illness by choosing to be overweight or by not looking after your heart or eating bacon) - why should anyone bother with you if you cause so much extra work by being incontinent or blind or having diabetes?

It is perfectly reasonable to want your disabled child treated equitably with other children.

Every other Friday night for autistic teen.
Zero for other autistic 7 year old.
Luckily both at mainstream school and enjoy going.

Zero.

I got told “you wanted kids,you got kids”. Fair enough.
I don’t ask for any kind of support and I’m not available either

Well said. What an ignoramus!

Maybe once in awhile a long time ago - not at all since DM died 7rs ago.

It can be a lonely path with an sen dc, but that can be a bit of a 'blessing' sometimes.

My kids are nt and abled, but GP show zero interest in them anyway. I'm sure GPs in general suck even more with ND and disabled grandkids, but my point is they pretty much suck in general, barring a few exceptions.

We live in a different country so obviously I don't expect help on the day-to-day from them but showing a little bit of interest would be nice.

I guess I shouldn't complain, they remembered DS2's birthday. Sort of. I mean they mentioned it in an email they sent me (a rare enough occurrence on its own), even though they got the date wrong.

Other than that, not a phone call, not a text, no asking for photos, nothing. On the rare occasions we visit, they can't be much arsed though we only visit 1-2 a year tops. This year I'm staying home.

I have two DS with ASD, 9 & 4. 4yo is pre-verbal and stims with a bit of head banging.

PIL collect both boys twice a week from school, have older for regular sleepovers and take older away for a week each summer.

They are considering having younger overnight but are worried about not understanding him if he’s upset.

My sister will have older as will my aunt.

I don’t leave younger with anyone other than PIL as he can be upset but he adores them.

They don't, but not because my kids have SEN, because they are to wrapped up in themselves. They always were tbf and I don't rate their parenting tbh.

I used to reset it, but now I just do my thing and they do there's. I'm a single mum so at the times when I do need help, I pay for it.

None!! My dd doesn't have grandparents around, both grandpas dead and both grannies in care homes. I have a tiny family anyway but no one ever thinks to take her out for a bit. Sad really.

My child who I needed help with is now in his 30’s and as we live abroad I never had practical help except during holiday visits. But, I always
felt loved and supported emotionally and not once was I ever criticized when it came to my son or my other children.

Now my son is older I have help at home with his care and my other children who are all older than him have our backs in every way possible. Even my grandchildren know and accept that the family revolves around DS. That said though we all pull together and can still enjoy a very nice family life that enables me to be mum to my son and his siblings and a very hands on granny to my grandchildren. Practical support isn’t what we need in any great amount as that’s covered in other ways though my other children will willingly do jobs for me that need done but the emotional support we get is worth it’s weight in gold.