Calling parents of autistic (or other disabled) children with other children tok

[Bigfishlittlefishcardboardfox]

Hi,

Feel free to skip to the question bit…*

I have an autistic child and a neurotypical child. They are a year apart and the same sex. I work part time but in a relatively senior role - all the hours they aren’t with me, I’m working. DH works a very busy role too. It’s charity section so neither well paid for the level of stress although we are deeply committed to the ‘causes’. We live in an increasingly expensive area which we are tied to due to schooling needs. I’m exhausted all the time. We also have had family serious illness and a stressful work situation, as well as a friend having a breakdown who we’ve supported. DH definitely does his fair share but I’m the primary carer.

*The question is- how do I continue to meet my autistic child’s high needs whilst not neglecting my other child. Recently they have been clingy and tearful. It’s not like them. I feel like I need to up my game but I don’t have much to give. Unfortunately we aren’t eligible for respite (I have investigated!) but probably more of the issue (since I could arrange to leave the autistic child with DH) is my mental exhaustion.

Please give me tips for easy ways to connect (that doesn’t cost much!). I so want to up my game, but I’m also oh so tired from being ‘on’ for my other child - the meltdowns and negotiations and being playful and listening and visual supports and all the other stuff you become an expert in.

I know I’m being a pain but before you reply:

1)Please take it as given that whatever support we can access we already are and whatever support/therapy is possible for my autistic child we either have or (more likely) are fighting for!.

2. That you personally have an SEN child. I’ve spent my career supporting people. It’s very valid experience but it’s just not the same as 24/7 living it.

Game night? I dint have NT children but one is worse than the other as far as difficulties go the one who isn't as bad likes game night occasionally even as a small child we had bottle flipping games board games switch games we all play on the TV etc etc

I used to pay a local teenager to come and play with the DS with SEN so I could spend time with other DCs - sometimes she’d take him out but sometimes play in another room. It gave a bit of breathing space (I also needed it sometimes for myself to do stuff) I used the DLA for this. (Sorry to ask -I did read your post promise- but do you have DLA?)

I have DS6 who has SEN and DS3 who is NT. It's hard, and I always feel like I'm neglecting one of them. I've found that taking them both out somewhere special that DS6 can enjoy is helpful. He cannot go to most indoor kids attractions like soft play etc due to sensory overload, but he loves being outdoors in any weather. So we frequent local kids farms, take a few snacks to keep the costs down etc.
I also ensure I spend 15 to 20 minutes with each child separately at bedtime, looking at books, chatting, or just having quiet time together. My SEN child often just cuddles up while I witter on about nothing in particular. But yes, there is guilt. And there is no easy solution. Does your SEN child have any special interests?

I have 3 DC, DC2 has Autism and DC3 has some needs although we're not sure what yet. DC1 seems to be NT(ish). I don't currently work but did before DC3.

I sometimes spend time with DC1 after the other two are in bed. Even if it's just watching a TV series together it's still a connection, although I appreciate this is only workable if your child with Autism settles/sleeps well. My best suggestion though is to plan some time during holidays. So you both take the day off and one of you takes DC1 out for a special activity. Then swap during the next holiday. I've also sent DC2 to a holiday club or one of them has gone to stay with a grandparent during some holidays so you don't necessarily both have to take time off. We also occasionally do this at a weekend but not that often due to needing to fit in housework, extended family, homework etc.

Also "all the hours they aren't with me I'm working" sounds hard. We usually take it in turns to have a few hours to ourselves on a Sunday afternoon. Would something like that work for you?

I know you said you're getting all the support you can but are you also getting DLA? As this could help towards some of the extra costs or maybe cover some holiday activities?

Ultimately it's really hard and I'm sure you're doing your best in a challenging situation so don't feel guilty if you can't manage much 1:1 time.

We did a day once a quarter where we went to a cheapish localish hotel for a night with one dc and did whatever they wanted to do for the afternoon before.
This was often pretty low key, swimming featured a lot, the cinema, dinner in the hotel.
But it was one to one time that they were in control of.

How old, which sex, and what sort of things do they choose to do at home?

Divide and conquer worked here, one child per parent. Using after school club for the ASD child to get some space for the others. Using clubs and activities for the others to get a bit of normality.
All adults now and the older ones come home regularly to spend time with the two with ASD and genuinely enjoy their company so don't seem to feel they were responsible for their, at times, difficult and different childhoods

We have girls night when asd ds is at judo. I also make sure I rush to the door whenever she comes in from swimming, Brownies or whatever and make as fuss.

I know exact how you're feeling - it's difficult and exhausting.

I once nearly swung at a teacher who told me perhaps I should give more attention to my SEN child. Like most people who make comments like that, she had no idea how much attention I give to my children or enough knowledge about our circumstances to be dishing out unsolicited "advice". I left her in no doubt that it was my child without additional needs that was the one that actually suffered from lack of attention because of the huge amount of time taken supporting her sister.

Anyway, before I go too far off track this us what has helped.

• I have registered her as a young carer. I'm not sure if it's regional but there is a programme of free activities for young carers where I live. She has done several holiday activity days and has taken part in Zoom activities too such as dance sessions, art group etc. It really is very good.

I explain to her that it is specifically because of her being a young carer to make up, at least a little bit, for all the times we can't give her all the attention we would want to because of everything else going on.

If you have a scheme like that I really do highly recommend it.

• I do a martial arts class with my daughter every week. It's fun and it's 1 hour a week we spend together where no one else will interrupt us.

I hope those suggestions help.

Mine are way younger (still babies/toddler) but one seems more ND and one more NT. I absolutely channel most of my energy and efforts on the ND child and tend to their needs more. Don't get me wrong, I love them both the same but the NT child is quite easier to keep happy, although being the younger one.

I make sure that I have all the comfort/stim/special accessories to keep the mornings, afternoons and evenings as meltdown-free as possible (both in nursery full time).

I try to make them both physically tired (job permitting I take 2-3 hours after nursery and take them to a park or similar).
I treat the NT child similarly to the ND in the sense that both get a bottle, both get the same treats (maybe not necessary but saves me hassle).

I am ND as well, so it's quite hard on me when things go wrong but what I do is I make sure that the time I have available I do things that make ME happy and adjust this to the kids so they always tag along (yes, to adult activities) and this gives me time to re-charge. Hope this helps.

Thank you so much everyone. Your replies have been so helpful. Will look into young carers too.

I’m following this. I hugely sympathise - similar situation here. NT 4 yr old, autistic 6 yr old. Well I think the 4 yr old is NT. Same sex. But I don’t work at the moment so huge respect to you.

I feel like I’m totally failing my NT kid and that it’s showing in their behaviour. Ironically had their parents evenings the other day and my autistic kid is doing really well and my NT one was less positive. I feel all my resources have gone on supporting my autistic older daughter and I have neglected the youngest. I do try to do lots of 1-1 with youngest but worry it’s too little too late. And perhaps she’s ND too but I’m not seeing it.

Anyway I’m going to read through this thread again to see if anything is going to help.

Relate to everything you’ve said. Also, massive respect to you as a SAHM. I was for years and when you have children with additional needs (possibly anyway) it’s far harder than my job!

It was our NT dc who lost their calm and started throwing very heavy weights around one day at home, a tiny dd.
We had fucked up as parents and not given her nearly enough individual attention.

I'm not sure we always get it right but for the last seven years we have really tried to be more balanced and give them both individual attention.

This is how I feel- there are warning bells that I need to give my NT child more attention but I don’t think I’m succeeding very well.

So I have twins, one with a physical disability and other needs, and one who doesn't.
My none disabled boy wanted to join a gym so my husband and I joined and we take him separately one night a week, I get ab exercise class once a week, dh does his activity once a week, other ds has just started his activity again. Basically we make sure both kids get alone time with both parents and we have full family time. Dh and I spend very little time together alone but it's not forever and the kids need us now.

We have had to divide and conquer too. So my NT child and his Dad watch live sports matches together regularly whilst I am with our autistic son. Then I take our NT son out for a cooked breakfast on a regular basis. Its kids eat free at the premier inn so cost £9 for the two of us.

We also have a spot when our autistic son is asleep and our other son watches a TV show with us before he goes to bed.

Dd1 and Ds2 have had young carers referrals to centre 33 done by their schools. It means they get regular check ins with someone who isn't frazzled by dealing with the other 2, high needs children. They get the opportunity to meet and hang out with others in similar situations and dd's even gone on a residential this weekend (ds2's referral is still very new). Dd1 has been down as a young carers since mid primary and is now in year 10. She has been so well supported and it's taken the strain of doing extra away. It's kind of a respite for the non-disabled child and while we are all great at making sure the high needs children are getting everything they need, as you recognise, the others get left out.

Young carers gives them the opportunity to be themselves away from the family. So when we do have quality family time, we are all in a much better space to appreciate it.

Things we end up doing as a family are having 1:1 time with the 'low needs' kids. Even if it's just taking one of them shopping when we do groceries. Having an extra half an hour at bedtime for a tv programme that is just ours.

As a whole family, we have national trust and English heritage memberships. Cheap days out and activities during school holidays which, if we have to leave early, we can return to because we have membership so no impact on entrance fees.

It's difficult. But it does get a bit easier.

I found that more physical contact - cuddles on the sofa while watching TV, big hug and acknowledging her feelings when upset etc. - helped loads.

Also simple things like having her up in the front passenger seat of the car on a trip to the supermarket/on the way to a friend's house so we could chat and listen to her music together.
Making a cup of cocoa, getting under a blanket and reading different books on the sofa - being alone but together iyswim.

One of the easiest ways I found to give a dc attention was to cuddle up in bed (theirs or mine) and focus on them. Read to them, chat, play with teddy, whatever. Dh and I would often split bedtimes between us, so that neither had to do all the dc. 20-30 mins per dc may make for a protracted bedtime, but it was usually worth it and not too tiring for us. We didn't do it in birth order, but in the order of who was most likely to cope without attention for longest. Sometimes NT first, sometimes last. Ditto ND.

When they were young we always tried to take each dc away for at least 24h, sometimes as long as 3 days, every year. So once a year they would get concentrated, unshared attention from mum and again from dad. Both NT and ND. At the time Tesco clubcard vouchers paid for most of these trips!

It is hard. When you've got downtime you want to switch off and restore yourself, but you have other children and you have to push yourself to meet their needs, too.

I have 2 dds, one NT(17) and one ASD as well as other LDs (12). We have access to some short breaks respite and some after school clubs run by her complex, needs school. We can't access what we have been assessed as needing, as there doesn't seem to be enough provision 😢.

Dd1 and I have had a long standing tradition of "film night" on weekends and holidays. Sometimes it's scuppered by dd2's lack of going to sleep or staying in bed. Any opportunity of dp or I to take dd1 to the cinema, café, theatre etc. We have also used dla for babysitters, some through school and some through childcare.co.uk. Young carers is also a good idea.

I think by her very nature, dd2 will always have more attention. She has very little independence skills or sense of danger, so needs lots of watching.

We have an autistic 4 year old and what sounds like a similar situation to yourself - he's either with me or I'm working. My husband is great but the mental load, the appointments, the EHCP paperwork, DLA renewals etc. all falls to me. It is exhausting and this is one of the main reasons we've decided not to have any more children.

I think others suggestions of spending time with your NT child without your autistic child sounds like a good plan. Do you have anyone who can look after your autistic child so that both of you can spend time with your NT child at the same time occasionally too?

As well as Young Carers also contact Sibs.

If either DC is younger than 5 Home Start may be able to help.

Securing a very good EHCP will help as if you can make school life easier for your autistic DC it will help improve home life for everyone. I know you said you you already have or are fighting for all the support available, but many people don’t realise the range of support available via an EHCP. And if you appeal the education content you can ask for social care provision to be considered too as although you said you aren’t eligible for respite you should be eligible. Have you had a carer’s assessment and an assessment via the disabled children’s team?

We are in evidence collection for an ECHP application. School are very much on board and helpful but they say they have to try enough different things for long enough with him (i.e spend enough money) in order to evidence that his needs are greater than they should just be meeting as standard. No one whose met him paeds, education psychology, OT etc have doubted that he does need it but they have all said the same thing that it will take a shed load of paperwork. Thank you government cuts!

Apply for an EHCNA yourself now, don’t wait. IPSEA have a model letter you can use on their website. Your school are advising you incorrectly. The initial threshold you need to meet for an EHCNA is a) has or may have SEN, and b) may need SEN provision to be made via an EHCP. And having already had EP, OT input you can evidence that. Any other test such as having spent £6k or 2 cycles of assess/plan/do/review is unlawful. Evidence is gathered during the EHCNA.