2 hours ago
6 
Tristan was always different. As a baby, he never smiled or looked at me. By the time he was three and still wasn’t saying ‘Mummy’ or answering to his name, it was clear that something was going on.
He didn’t know who I was, which made me feel as though I was doing something wrong as his mum. You somehow feel it is your fault. It was heartbreaking.
I eventually took Tristan to the GP and after tests he was diagnosed with complex autism. I found it very difficult to accept and hard to understand. I hadn’t really heard of autism before and nobody in our family had it, so I didn’t know anything about it.
Tristan is pre-verbal and profoundly autistic – which means he needs round the clock care. He has no sense of danger, doesn’t understand the world and can barely communicate at all.
He is a very loving boy, who adores tickles and can now grasp a few words, so he will say, ‘I want tickles please’, which is the cutest. But my son will never drive a car or live an independent life. He will always struggle to tell me how he’s feeling. I don’t think he will find love or marry and he may not have friends.
Now 15, Tristan is at an amazing special school and is getting excellent support, but he is still very vulnerable. As a preschooler, when I went to pick him up from nursery, he would run away from me. He didn’t want to come home because he didn’t know who I was. In the end, I had to take a picture of myself and put the word ‘mummy’ underneath it, and put it around my neck on a lanyard.
Thankfully he now does know who I am, but he still can’t sleep without holding onto my arm or my husband’s. We take it in turns to sleep, which can be quite exhausting as he is up every night – and is very noisy. He gets out of bed, bangs things, turns lights on, walks around, opens the curtains or makes “stimming” noises.
When he goes out on trips with his school, he has to have a label attached to his trousers that says: ‘My name is Tristan. Please return me to this address.’ At home, we don’t sleep much as he is up every night – and he is very noisy. He gets out of bed, bangs things, turns lights on, walks around, opens the curtains or makes “stimming” noises.
One of us always has to be in the house with our son. We keep the windows shut and everything locked because he will try to run out the front door, or the gate, or he’ll try to climb out of windows. Tristan clambers onto the work surfaces and puts things in the toaster to see what happens to them. You can’t take him out for a walk as he tries to touch the cars as they drive past.
My son needs constant supervision and round-the-clock care – and I think he always will.
Life is harder today than when he was a baby, because at 5’5 with size 10 shoes, he is taller than me and very strong. I can’t pick him up and take him out of a situation. I can’t explain to him how to behave because he just doesn’t understand. He used to bang himself in the face until his nose bled, so day trips and nights out in restaurants that other families enjoy just aren’t accessible to my husband Csaba and I and our other son, Henry, who is 17.
As a doctor, my husband works out of the house five days a week, so I am locked in with Tristan and very restricted. I can’t just pick up and go shopping or have friends over. I can’t go out for a walk or a coffee on a sunny day. Tristan can’t go to the toilet alone so I need to watch him constantly.
My other son has also been very sheltered as he hasn’t had any exposure to normal things. When he went on a school trip to Bath he told me: ‘Mum, I’ve been to a city!’It’s been a tense upbringing; he could never have friends over or sleepovers. He’s always played second fiddle, which is a lot for a teen.
Just a few weeks ago we tried to take Tristan to Lidl. After planning how it would work all day, when we got there he was scared and stood in the doorway shouting ‘Help me’ over and over again. There was nothing I could do in that situation, so we just took him straight home. It just all makes you feel defeated and like you’re never going to be able to give him what he needs.
The thing that all parents with a child with special needs worry about is who will help their child when they are gone. Every time I dress Tristan or take him to the toilet, I think: “If I wasn’t here, who could do that? Who would be able to do that?”
The thought that he is likely to outlive my husband and me is terrifying. What will happen when we are no longer here? He can barely talk, so who will be his voice? Who will stop him from being taken advantage of and make sure that he is provided for and protected?
I used to lie awake worrying about it at night. It was so painful to imagine a world with our son in it and not being there to look after him. I know this is the same for many parents in our situation.
For a long time, I could rarely think about it, but it got to the point where I realised I couldn’t put it off any longer. So around 10 years ago, I started to plan for Tristan’s future after we’re gone.
I went to seminars, visited solicitors, read books and studied, met with professionals, and phoned up help desks. I learned about disabled persons’ trusts and wills. For instance, I didn’t realise that you can put your child’s name on the will, but they won’t receive the inheritance if they don’t have mental capacity. There are problems accessing that cash, but there are also problems if they are able to, because there is nothing to stop someone in Tristan’s future from taking money from him.
One parent I know who has a daughter with Down’s syndrome, said she went into the cash point, took out hundreds of pounds, put it in her purse, went to the corner shop to buy sweets and left all the money there.
I also learned that if I left Tristan too much money, he would lose any kind of supported care, as it’s means-tested. He could even be left worse off. I am a chartered financial adviser and I didn’t know any of this until I started researching, so how would other parents?
There are so many traps and pitfalls to look out for, so I now use my knowledge to advise the families of the vulnerable around the complexities of financial planning. Last year I founded the SENDA Alliance of UK Special Educational Needs and Disability Advisers and I have since put all my learning into a book to help other families like ours so they know how to leave behind a protected inheritance and ensure their wishes are adhered to.
I have worked with thousands of parents in a similar situation and I know they don’t want to think about this stuff. They want to bury their heads in the sand because it all feels too much to deal with. But you can take those worries and build a plan with the help of a financial advisor and solicitor, so you can get on with your life.
I know this is an especially big concern for single parents, as it is quite isolating to bring up a child with special needs because you can’t go out socialising. That puts a lot of stress on your relationships, and you have a lot of divorces in families like ours. But you don’t have to be alone. There are brilliant companies and charities that can help, and a big community cheering you on.
Now we have a plan, life insurance, our finances in order and everything we need in place to do the best by Tristan in our absence. You don’t stop worrying, because, as a parent you never do. But I do feel relieved and empowered and in control, which gives us much more peace of mind.
● Rhiannon Gogh is the author of Planning with Love: A Guide to Wills and Trusts for Parents of Children with Special Needs (£15.99), available from all good book retailers.
As told to Sarah Ingram
Bengali (Bangladesh) · 
English (United States) ·