6 year old non verbal autistic with significant learning disability, just feeling sad

[Rainbowsandbutterflies1990]

I'm finding summer hoildays hard. She is so full on and needs watching constantly she also struggles with her sleep when not at her special school. I'm just feeling really sad her being non verbal. I usually feel sad around her birthday in January but it's hitting me in the summer , I've seen a few times children that are her age and I used to meet up with them and their mum, when she was a baby but had to stop as I found it so upsetting them being so different at around 2 and just seeing them lately talking to friends and their mums is just really upsetting me. We tried to go away in hotel and it was disaster so won't be able to do hotel again. I'm limited to where I can take her when out and about in hoildays. I also have a 4 year old that's typical currently but showing traits but not on scale of elder daughter. And I feel sad for her missing out on things. I'm just sad 😔 how much my daughter non vernal and autism effects are family. Even reading some posts on here I think dam it why can't my daughter have struggles with friends (she has non, not interested in others) just feeling crap

Have you had social care assessments? Do you have support to help DD access the community?

Does DD take melatonin? If not, it is worth asking for it.

We have been given hours for break but on waiting list and other services not suitable, yes we have melatonin but it doesn't keep her alseep during night so she will have it if she is still awake at 10pm (which is most nights) but not before as will be awake for hours in night.
I'm not sure what access the community means.

If melatonin isn’t helping enough there are other medications you can try, so do ask about those.

Accessing the community means leaving the house, going into the community. If the organised providers have a waiting list, have you thought about asking for direct payments and looking for a PA yourself?

Yes but they refused and with my adhd I dont think it's best option anyways.

We leave the house its just limited what we can do. She can't take part in any activities her age and the special needs ones that a local charity put on are all for more able children. I told them about it, they just haven't anything got More suitable.

They refused other medication or direct payments?

I didn’t say you didn’t leave the house, but it sounds like support to help DD access the community would help, which is why I suggested it. The LA need to provide the provision, if they have refused DPs (I appreciate you say you don’t want the, but if you did you could challenge this. You could always use a payroll company) and their provision doesn’t have places they need to provide carers. You should complain.

The direct payments was refused and it took 4 years to access melatonin, as i kept getting refused that. Just wanted to check are you saying the direct payments would allow my daughter to 'access the community '? We tried to find a carer to take her for a private arrangement that my father in law was going to pay for but couldn't find anyone.

I appreciate u replying, I think the main issue I have right now is the sadness I feel that my daughter is still non verbal and not able to do basic things most children and parents take for granted.

No amount of respite or my daughter accessing the community is going to help with that. But as I said I do really appreciate u replying and Trying to support.

Do you have anyone that can help you advocate? Both with social care and health.

I’m saying you could use direct payments to pay for a PA to help DD access the community either alone with the PA(s) or with you and younger DD as well. There is a difficultly finding staff in the care sector, but children’s services can do more than shrug their shoulders and say “nothing we can do”, e.g. they can fund at a higher rate to attract more applicants, they can fund 2:1 to attract more applicants. Some people have success asking staff at local special schools whether they want a few extra hours. Obviously it is up to you, but support, including support to access the community, can support DC’s development and can relieve some of the pressure and upset you feel.

Depending on DD’s needs you could also look at continuing care funding.

Your daughters special school will have a family lesson officer who can help you access more support for your daughter , tell you what help clubs she can access and advocate for you.

A social worker can help with direct payments for a carer, make a referral to your LAs learning disability team who in turn can help.

Try these avenues

Your doctor can help you with therapy and refer you if you think it might help.

I can’t promise all the above will stop you feeling sad, but knowing you’re doing everything possible to help you, your daughters will help your mind.

I have already tried to get direct payments they gave me short break local offer 'hours' I got an extra 60 on top of 40 I currently had. They don't give u a social worker anymore in my area it goes through short break local offer.

I have been doctors and been referred to mental health help councillors which stopped last 6 months, I've realised that talking to someone about how sad I am my daughter isn't able to tell me her basic needs. And I'm jealous of other families where autism doesn't effect them doesn't help as won't stop what I deal with. People say it gets better with time, well I'll he honest it doesn't get better it just gets different.

Wanted to add I've joined a waiting list to use the 60 hours i cannot use them if there isnt a place for her to use. . She has been using the 40 hours at a play scheme and that was at start of hoildayd for 3 weeks and she was there twice a week for the 3 weeks and I coped better during that time.

Complain about the direct payment refusal or request the LA commission other provision directly. You have the right to request DPs even if you have been offered a funded service - see this article. Push for a social worker, too.

Instead of being resigned to thinking you can’t use the hours if the funded place hasn’t got spaces, think the LA can’t state they are fulfilling their duties if they have only offered something that isn’t actually available because it doesn’t have space and challenge the LA.

I am happy to challenge the LA about the waiting lists and not beng able to access the hours but I don't actually want the direct payments. I wanted to use hours on 'shared care' and I've been told they don't even have a waiting list! I have been trying to get extra support for last few years and have had to push for the extra 60 hours. Which was stressful. I'm currently waiting for a adhd diagnosis which doesn't make any of this particularly easy.

I know you don’t want DPs, which is why I posted “or request the LA commissions other provision directly.”

Do you have someone who can support you to advocate?

BTW I never said any of it was easy. It isn’t. However, the reality is DC whose parents advocate for their DC and enforce their rights get better support. It shouldn’t be that way, but sadly it isn’t going to change any time soon.

It's not easy because I have adhd , my daughter was diagnosed at 2 she is now 6 I'm aware of the crappyness of the system and who shouts the loudest gets the support. When I wrote the post I wasn't asking about support I was talking about the emotional toll on a parent when there 6 year old is non verbal.

Again, I didn’t say it was easy. The emotional toll will be easier to cope with if you have the right support. I was trying to help, but won’t post further.

OP does she use any PECS or communication device? What’s her receptive language like? Is she seeing SALT regularly?

The summer holidays are tough for many parents of SN kids. You’ve almost made it, hang in there

We have tried in past but she isn't interested or able. She is constantly repeating words and phases from TV , at the moment she is saying happy birthday over and over. She sees SALT at school and has her ehcp review in November so will get a report from salt then, we have just had OT write report and give advice as she is chewing everything at moment .

So she is verbal but no functional language yet? Does she seem to use these words or phrases in context?

No, not in context so that's why I consider her bon verbal

It’s so tough. My boy is a total handful too. Was awake half the night so me and DH are zombies today. always trying to figure out whether melatonin is worth it - he definitely goes to sleep easier but at least once a week he’s awake all night.

’Comparison is the thief of joy’ is a good phrase to keep in mind. You have to train yourself not to compare your daughter with typically developing children. Much easier said than done. I make my focus for my son ‘is he safe? Is he happy?’ And if I’ve got those two covered, a lot of the time, that’ll do.

if you’ve seen my other posts - you’ll know I certainly don’t have it all sorted and life is hard and challenging! Every day.

I'm with you. I have a nearly 5 year old very similar and I find just one exhausting. I would love to just have a "nice day out" - I have only a small handful of places. My son is very violent too and I'm really bruised. No family support. It's been such an intense summer I'm exhausted. He only manages 2-3 hours in school but this gives a bit of a rest.

I'm totally with you and feel the same 💐💐

And I'm with you on finding things people complain about really hard.

"My child talks too much." 🙄

My Tommy is 5 and autistic. I love him so much. He doesn't like to leave the house much. He hated our holiday :( He screamed at everything. He has no proper friends at school either. He can't tell me about his day. That makes me so sad. He can't answer most questions I ask him. He repeats t
he last word I say:( I agree with the other post about as long as they know they are safe and loved there isn't much more we can do. I feel so angry at the autism diagnosis, I'm gutted He won't have a normal life. I know things will be hard for him. I'm 43 and worry about what will happen to him when I'm gone :( All I can do is make him smile with bubbles, paw patrol and trains.