Future

[1990child]

Hello everyone , I'm looking for advice really .

My son is 8 years old he has high functioning level 3 autism , currently pre verbal ( he was non verbal) , has a global developmental delay and is a sensory learner .

He attends a local sen school which he will be in until he reaches 11 years old year 6. I have already got the next process moving and secured his next setting at another sen school from year 7 to he's 19 years old it sees him through secondary and college.

My biggest fear in life is what will become of him when I'm no longer here when we pass on. I'm still only 34 and his dad my husband is 40 he's currently our only child .

Our families are not in the right health to support us with him as they have their own personal health concerns .

How do we ensure our son has a future without us ? The future feels uncertain he is always changing gaining new skills and small steps of independence. Hes currently very much needing alot of support he is still a child so I am in no means writing off opportunities he has coming .

How do I make sure he gets his needs met when we won't be here ? What services should I be approaching ? Assuming as I'm his mum would I become his power of aterny and get him set up with life insurance and his funeral funds .

I do claim dla for him to support him financially. I don't claim carers allowance as I currently work as a teaching assistant in his sen school so I earn over the threshold. But I have previously claimed so I know it's there to reapply one day if needed .

I'm aware of respite care services he currently has a friend of ours provide respite who has the training in her job background. But as our son gets older I think we would need to reach out further as he's getting bigger and stronger . She I'm sure will one day have her own responsibilities of her own children she's only in her young 20's.

He attends a sen session weekly for swimming which he enjoys . I've tried looking for gymnastics and trampoline classes that could cater for his needs to no success. I want for him to get equal opportunity's and be given the chance to participate in social activities .

I do have a government gateway pass but I don't understand how to use it .

I'm feeling overwhelmed although I provide a fulfilling and loving life for him and teach him skills and independence. I'm terrified for his future and his mental health without us .

I pray he does get older meet a partner who will love him as much as we do and accepts him . I know some adults with autism do grow to do amazing things like education , work , build a relationship and family , have their own homes , drive etc .

I want to ensure he's safe going through life and plan ahead whilst enjoying the now and present.

I may sound way to premature in my planning but I can't bare to think if him lonely and left to struggle to survive .

[Eeviee]

hello. I’ve read your post and I can hear the stress and anxiety. No one can tell you what the future holds but it will be a challenge and there will be a lot of heart ache and joy along the way. You seem to have everything for your son under control at the moment My best advice to you at the moment is to get your self some counselling so that you can cope with the stress and anxiety that you are feeling. Reach out to bringing us together which is a great organisation for parent support. Good luck.

[Chocolate-heals-all]

Hi there! I don't think you're premature. It's helpful to have an idea of what options are available, although things will change as legislation changes and as your son's potential becomes more apparent.

Your son might not speak but might be well able to learn to read and to type coherent sentences. There are plenty of ways to teach those skills to a learner who is not speaking.

I agree with what Eeviee has said: it’s a good idea to check out your own support needs. If you’re working in a specialist school then you will have contact with others who are in that world. In my experience, even specialist schools get it wrong quite a lot, and it’s worth your while to get yourself training in the needs of autistic people, especially because everyone who’s autistic presents in their own unique way.

My son is 21. When he was about 8, we set up a trust with Mencap, which has some money in it administered by the Mencap Trust Company. They make it their business to keep an eye on beneficiaries and to use that money in a helpful way. One way I want them to use the money - when we aren’t in the picture - is to send an independent mentor once a week to ensure that things are ok with him and to advocate for him if necessary. Having money in trust means he can't spend it on stupid things, and also it does not need to be declared when there are questions about means-testing

My son gave his elder sister lasting power of attorney for health and welfare decisions. It’s worth your while going to a Mencap presentation on the Mental Capacity Act. For us, it’s very important that government bodies don’t snatch control over key decisions. That starts to kick in when your son turns 16, and when he’s eighteen he can give lasting power of attorney to someone he trusts if he understands the implications, but otherwise you have to go to the Court of Protection to get them to appoint a deputy for him, someone whom you trust, and you can in fact do that when he turns 16. You can apply to be a deputy for him. But generally you should think whether it’s best for that deputyship to be with someone in the younger generation. Or a member of the younger generation can be named as a “cover” should the acting deputy be incapacitated. Also, at present, parents are invited to become the appointee of offspring who turn 16 and need someone to fill in forms and manage money, for benefits. I am appointee for my son.

As time goes on you will see that what your son wants might not coincide with what others approve of, and your job might be to ensure that nobody forces him to conform unnecessarily to external superficial norms. Your son might be quite happy spending hours playing with his particular favourite objects, and he might even need that “down” time to enable him to find the strength to engage with others one hour a day. The “down” time isn’t wasted. It’s for recovery and regeneration.

[DorrieReynolds in reply to Chocolate-heals-all]

Such great advice. It's what every single parent of neurodivergent/disabled children should be given, instead of being left to fumble along in the dark, discovering things we should've done only when things go wrong. Thank you Chocolate-heals-all

[Granolol]

I understand your worrying im a worrier. Whats making you think so much about when you're not here are you ill or dieing. If you are ill then I understand if you're guna die young then i understand but Otherwise live in the now my love xxx

[DrSarahmac]

hi. I was in a similar position and frame of mind to you 30yrs ago. My daughter is now living semi independently with support from us and a part time carer. We have a trust set up with life insurance for when we’re gone. It may be 40years away but it may be tomorrow. I should have done it much much sooner but I didn’t know where to turn. The mencap seminars which I discovered in 2022 gave me what I needed to put that solution in place. That had always been my biggest worry. What happens if I die. The trust has given me a peace I haven’t known in over 35yrs

I agree with everything chocolate-heals- all says. I also agree with Eevie that you may need to seek out some support for yourself and someone you can share your darkest fears and thoughts with. Other than that I think you have all the immediate bases covered and are clearly planning well ahead for your son’s education.

Beyond that it’s impossible to plan at this stage. Sometimes we have to wait and see. I know it’s not easy and it won’t stop you worrying. I’m happy with every step and decision we took and looking back there’s nothing more we could have done or done better. Sounds to me like you’re doing everything you can and doing it extremely well. Try to step back and say “I’ve done everything I can for now and I need time to care for myself and enjoy life”. And keep checking back in here as you have questions. It’s a great forum. Wish it had been here back in the 80s 😂

[DrSarahmac in reply to DrSarahmac]

PS like you I have no other children and no siblings of my own I could ask to look out for her. So I understand why the “what happens if I die” question is so huge for you. xx

[Galwaybay2]

I agree with Sarah, it sounds like you are doing all you can while looking into the unknown, grieving for the imagined certainty that comes with having a child who fits. I was there too and it can be frightening and I have also come through knowing that my son has a good happy life in supported living. I know he will be ok and no longer depends on me for his happiness. Doing what you're doing in finding activity groups will not only give him his own social networks that become more important over time, they will also provide you with a network of people who open up your world and support you practically and emotionally at transition points in your son's life. If you consider some personal therapy I would suggest that you find an accredited psychotherapist and ask them what understanding they have of learning disability and autism before seeing them. You can find someone local to you on directories like The Counselling Directory, or the BACP register.

[natalievbailey]

Sounds very good. I'm a adult with a learning disability whose a little girl. I'm supposed to be in supported living but they don't help and have issues.