Last year I had a significant birthday and so did my husband, he’s younger than me, but it was a significant birthday and there’s no way I’m going to separate a party, a family party, or an extended friends without having my boys, because they’re the apple of my eye and the delight of my heart. So we had to plan things very carefully. And I knew that they’d need, the boys would need their own spaces, their familiar spaces indoors. So we planned an outside party, which meant we had to have it away from our actual birthdays because we had to have it in the summer, and pray the weather was nice.

But it took an, not just the normal sort of thing of arranging the food and arranging the putting up of gazebo, party gazebo and all those things, and making sure you know whos coming. But it was warning the family that if the children were in the special places it meant that they’d had enough and that they weren’t to be approached, you know, even though auntie or uncle or brother or sister or whatever might want to, that they’d taken themselves away. And then I had to broach it with the boys and sort of almost get their consent. Now look Grandma really, really and Grandpa really would like to have family down, and we want to have music. And now we know that you don’t like music on, but we’ll have it in the garden andrdquo; We found sort of giving them ownership of it helped because of this control thing. So what do you think it would be nice for Grandma to have at her party What do we like to have at parties You know, and then involving them. So choosing even the serviettes or choosing the balloons. Can you come round and help Grandma put up the tent so you can see how big it is? You’ll be such a big boy, you know, you can give grandpa the pegs and we can put it in sordquo; And actually, it worked.

I mean it was a big gamble because it might not have worked, because other family events I’ve had, even when I’ve had barbecues in the garden, people have come through this space, through to go to the toilet even, and my grandson has said, Hello, hello. Outside. You go in the garden please. You go in the garden please. Outside. Outside in the garden. And I didn’t know how it would work, but giving them the ownership and giving them the right to not have to join in if they didn’t want to. If they wanted just to be on the computer or on the Wii or whatever, fine. This is their space, their upstairs rooms. They’ve got rooms here that they see as their bedrooms. Do you know what I mean?[inhales].

It just took a lot of organisation and it paid off on the day and it was absolutely brilliant. And I couldn’t believe the sort of other side of my grandson, the social side. He decidedof course he had to boss everybody, he had to tell, Oh the candle in lantern’s gone out in the tree. It needs to be lit He had to be in command but it was a kind of social side of him.

But… when a child is significantly going through autistic specific education and in there is obvious delay, you do begin to think about will they perhaps ever be self supporting or out there and I can see a time when the support. I mean my daughter is very realistic. She said, I know Mum, people say oh well you’ve gone back to work, and sometimes there’s a bit of disapproval She said, But come eighteen when the school services aren’t there, let’s hope society is advanced and there’s enough finance for there to be places for him to go to spend his day, because if he doesn’t hold down a job he’ll just be at home. And that’s a reality and then, you know, we all know, the awful things where parents with children with disability have to start looking at areas as they themselves get older. Is there path? Is my daughter’s path when I’m no longer here going to have to go down those difficult things of finding respite care? And getting her child used to may be having to moving into sheltered care andand of course there’s nothing I can do about it and I absolutely know that she’ll do absolutely the right thing. And I’m so proud of her, I can’t say [interviewee is crying] but it’s a sadness isn’t it? I’m sorry.

I think the ASD support group that I belong to has been good, because sometimes we have grandparents there, who are actually the daily carers and they actually are the carers for their children, for their grandchildren as in loco parentis and sometimes it’s a two way thing. They’ll say, Oh my Mum feels that as well And sometimes then the Mum will come along to the, you know, the parents’ Mum will come along and we can have a chat. And sometimes they say, Oh would you mind having a chat with my Mum. She’s finding it difficult to understand the situation, but because you know, you’ve now been doing it for quite a long time. From two to seven you know, is quite a long number of years to get your head round some of it. I think, you know, it would be really useful that you could share, and to let her know that, you know, that the little one having such a restricted diet, you know, because she worries about, she worries all the time about what can I feed them if I’m looking after them and things, things like that So I can say, Oh we’ve been there. You have to actually just sort of accept, you know, whatever it is.

And so some people are very skilled at giving you support and other people perhaps are blunter, and sometimes if people come out with thingswell, a particular day, my daughter had a complete sort of meltdown on the phone to me, and she said, Mum, I know everybody’s here and I’m really grateful. I think I’m incredibly lucky to have all the support services coming in She said, But if I hear one more person saying, Have you tried this?&rsquo She said, I’m going to have a meltdown myself. I shall lay down on the floor and scream and kick She said, Because if you’re getting it from lots of different people who are making suggestions around may be the language support, and may be around the mobility support, or may be around behavioural support, and they all are saying, and you’ve gone to them when you’re quite upset yourself and said, Look I really need some help And then it almost deskills you in a little bit, because you think, Well have I not tried hard enough Or she said, It panics me, if they’re suggesting things that I’ve been reading up about and I’ve tried to put into place and then they say, Have you tried?’ And I think that’s the only suggestion they’re coming up with and it didn’t work. It makes you feel panicky. Oh my God, nobody can help me You know, where in actual fact, the best help that she had was where people just honoured what she’s already doing, took her down calmly, saying, Well we realise that you’re at the end of your tether over this or whatever. When did this first start happening? Let’s look at it. What have you donewell you know him really well, what have you done before in the past, you know, based on your way that you relate to him has really worked? Can we use that to that help with this problem And even gave herwhen people approach you like that it can even, they said, Well why does this problem actually really matter at this moment? Have you thought about, you know, who suggested this? Is it right at this moment to even tackle this? If it’s making you all very unhappy. You know your own child better than u. Someone who supports her in actually building on her skills, giving her back the ownership to dealing with her own son, and refocusing the attention away from what she or obviously, her husband as well, I’m not knocking him out of this equation at all, but obviously she’s my daughter, so she’s the one whose chatted to me about how she feels. But focus it back on what is the problem for him. For the little one. The one they’re most trying to help. And notso she can be clear about how she’s helping him and they can be clear about her wish is to support him. And not to be questioning her own skills or questioning her own abilities as a parent. Because that’s unhelpful.

The government produces, in association with people, an important little booklet that is available about information for parents, but there isn’t a similar book for grandparents. The National Autistic Helpline is always there for anybody, any family member who needs to get more information or support and they actually have got a brilliant website for grandparents which is easily accessible and goes through some of the things that grandparents will face about understanding autism or offering support to your family, offering support to the siblings, it’s all in there. But it isn’t in a booklet form. it’s only on the internet at the moment. Or it was last time I approached them, and it would be brilliant if that was actually funded and put out there as a booklet because not all grandparents, particularly people of older generation than me, because grandparents come at all ages. Some of you can start be a grandparent at 80 and older. it’s really useful to have something in your hand to keep as well. it’s fine to read something on the internet, but to have it in your hand to keep is really useful. And it’s very practical and it’s very easily accessible in its content. So it would be great to see that wherever there’s a clinic or a diagnostic area of, of a hospital or speech and language therapy, these kind of easily accessible information is there. And I think that it’s after diagnosis as much as before that parents need support because they enter into a whole new world of parenting.

I used to fall asleep with Donna Willliams and Temple Grandin and, and Tony Attwood books not being read because I was so tired and slipping off onto the floor. So it’s the last thing you’re thinking about at night, and it’s the first thing you pick up in the morning. And I have to confess that there’ve been times when I’ve thrown the books down and I’ve felt, it’s too much. I’m coping with it. I can’t actually deal with reading about it.

And sometimes reading the range of difficulties we might be in for in the future. While it’s an intellectual thing I should certainly know about, let’s just cope with where we are now. I don’t want to think about the children, who with autism have additional behaviour difficulties or can become clinically depressed or are perhaps getting the wrong kind of support.

And I have to say that I find the books that have been really helpful are the ones that have been written by those high functioning autistic people themselves and Aspergic people, or people whove in their families have done the research, because they saw in their own children that they needed to look at a medical form and not a psychological form, because they know that this is, particularly the study, I’ve forgotten the gentleman’s name, but a doctor who did pioneering work, because he had two twins, one of whom was autistic and one who wasn’t. And they’d been raised exactly the same way, so he knew it just couldn’t be the environment of the family or psychology alone, it had to be something more, and went onto a medical diagnosis, and medical research. That’s very helpful isn’t it?

You know, and so when Temple Grandin’s books came out and when she was interviewed on television and she could explain as an adult what her world had been like as a child, and all the things that she found difficult. You know, I was thinking when she was talking about… She talks about how as a child she would runs and endlessly through her fingers and be completely absorbed in her own world and needing that tactile thing and it kept her safe and contained and it was something that she just had sensory pleasure from which she didn’t get from some other hugging or kissing or other things, and it was something she liked. And when she talked about it, I suddenly sort of remembered my little grandson just constantly running his hand across the textured surfaces and it’s something he needed to do and he really need to do it. It was, you know, from a really early age or being disturbed by even minutiae on the plain floor surface and picking up those things. So when she, when she was talking about how she looked at the cattle on her uncle’s ranch and saw the patterns that they saw were different and what had spooked them, that leaves were there. I sort of thought, Yay! I can understand tha. This woman from her own experience has been able to open a window into my grandson’s world and I have found those the most useful books and some of the other things that have been done from clinical studies, I’ve not wanted, you knowI probably will get round to doing it one day because I like intellectual understanding but I have chosen carefully what I’ve read and at times, especially in the early days when I was coping with the emotion sometimes I thought, I can’t deal with that, it’s enough to deal with what I’m dealing.

My daughter-in-law, but they’ve been together for a long time, they’ve just celebrated their marriage now. She said, Oh well, I really want to know the boys, but I find it very difficult, because if I talking to them on the, on the Skype, they clam up, or it’s, Hi Auntie and then they’re away. You know, they don’t stay, they can’t have a chat with me, so I don’t get a sense of the. And I say, That’s part of language communication difficulties, you know, that’s part of the social interaction difficulties So she said, But it’s very, very hard for us, because we get only kind of the press view of what autism is about. So we watch the television programmes and the documentaries. We try and get an understanding, but it doesn’t actually give us a sense of how they are. How they are along the spectrum, or what makes them worried and concerned And that’s something that I have shared with family members. I said, you know, I’m very impressed by the fact that you’ve tried to look at documentaries on the television, and you maybe phone me up and so ooh I so a programme with Temple Grandin, isn’t she fantastic Or, I watched, Young, Autistic and Starstruck Or, Oh wasn’t that play about Thomas wonderful? Would it help if you got a dog in your situation No, my grandson’s terrified of dogs. don’t even mention dogs. Not all children with autism want a dog. Please don’t get that idea

But I found an awful lot of people and family members included have said, because they’ve seen programmes about savants. Oh well, oh yes, I know it’s hard that they’ve got ASD, but they’ve usually got some particular gift as well, haven’t they? I’m sure that the gifts will emerge, you know And yes, quite a lot of children with ASD have got particular gifts, they really have and it’s brilliant that they’re, their ability to sequence or number means that, or are musically gifted, or they’re incredibly good at mathematical skills or, or they can paint, completely from memory because they’ve got photographic memories and, and this is true and yes of course one celebrates that. But there’s an awful lot of children who are just on absolutely the same normal spectrum of intellect as every other child and often below because of the very nature of their ASD and their living in their own world means that they’re not accessing the curriculum in exactly the same way as other children, their own peer group, let alone having any particular gift. Do you know what I mean? And it’s so hard to try and get that across. it’s very difficult.

Well I think because you’re aware always that quite a lot of life is so difficult for them, that when suddenly they get something or everything falls into place for them and you have a really good day, it makes it an added joy, over and above what perhaps you’d normally have. But then sometimes they show you things from their own perspective and world that is, that makes you look at the world differently yourself. You know, sometimes if theyat one time my grandson was absolutely fascinated by putting trains through tunnels and things and he’d lie flat on the floor, and in the end you end up looking flat on the floor and you see the train set in a completely new way. And it, you know, you can really enter into all the fun and the excitement he gets and what makes him happy. And by including him in that family planning for that big party and suddenly seeing this other side of him came out because he felt he was in control, because it had been well planned. He just shone, and you know, that is a memory that will stay with me to the very day that I die.

And I think, you know, I’ve been so lucky when I, that makes me feel sad for them because I’ve been so lucky as a parent. I’ve had such fun with my children and going off to visit grandparents and going out for the day and I have been able to say, Hey, it’s a great day. Let’s go for a picnic Let’s go so and so Let’s jump in the car Let’s jump on a train or let’s jump on a bus You know, and just maybe even going up, sometimesnbsp;

We lived in London when my children were little and we could just jump on the train and in ten minutes to fifteen minutes we could be in the middle of Trafalgar Square and feeding pigeons or just running round stupid, you know. Or nipping into look at favourite pictures of the National Gallery and these are all things that just are not, they can be very carefully planned and it’s not that my daughter and her husband are restricting the children’s access to things, but it becomes an overwhelming task. And it’s a task that they can rarely all do together. So they never share together, parents, they’re always having to tell each other about those wonderful moments that you can have with your children and let’s [tears in voice] its upsetting…as their mum, do you know what I mean?

And sometimes I have sort of almost more anxiety about my elder grandson than the younger one because I think the level of disability is so much more evident in my younger grandson and it’s what people see isn’t it? We all know that people find it quite difficult to come to terms with neurological disabilities and behaviours that may be displayed by children along the spectrum, because it’s the unseen disability. it’s much easier if someone, sadly, it’s not, it’s not a comparison in any way, but if people can see someone’s in a wheelchair of they’ve got you know, a helmet on their head, or they need support to walk or whatever, it’s much easier for people to understand disability than if it’s a child whose having a meltdown in the supermarket, because they’re just completely overwhelmed by all the sensory things that they’ve got to deal with in there or because they can’t make themselves understood. They can’t find what’s worrying them about the way something looks on a shelf and the pattern of its upsetting them and disturbing them and they can’t explain that and they’re having a meltdown. So many people just think that they’re badly behaved kids.

But it’s very, very hard if you’re a grandparent where you’ve got one family where the children haven’t got any kinds of difficulties and another one that has. And you know that you’re a main support source for that family, then suddenly getting it in the neck out of nowhere from another own child of yours saying, Oh it’s all right because they’ve got difficulties. You’re not there for me. I could do with a bit of help sometimes, but do I figure in it You know, and they come out with these things.

And then you know you feel consumed with guilt and you think, Well I’m sure I have helped them. I’m sure that I’ve tried to balance it all ou. But sometimes how it’s perceived isn’t how you might come across. Do you know what I mean? That’s incredibly difficult. And when they share stories like that I feel really sorry, you know, and sometimes it takes another mum in our generation of mums to understand where that other grandmother, a mother in this situation is coming from.

You do your best, but you often feel quite, you know, you see other people saying, Oh let’s just pack a picnic and go off to the seaside for the day, shall we And you know that’s never going to be part of your experience as a grandparent or as a parent. And seeing that my daughter, a lot of weekends, they don’t have real family time, because one of them has to do some with one of them and one of them has to do something…it’s rare. So they don’t oftenbviously they share with each other all the delights of the events that they’ve done with the individual children but they’re not there doing it together.

Some of the things that my grandson finds physically difficult even at seven. He finds, he’s very worried about balance. He sometimes has difficulty in balance. When he was younger he liked all his chairs with sides. So he didn’t like sitting on stools and one of things, he’s always found quite difficult is taking himself to the toilet, because and he, even at seven he still needs to have the baby seat, because it’s not so much balance. And even will sometimes still hold the walls on the side of the toilet cubical and he finds actually finding, identifying where to wipe behind him, in the same way he finds it quite difficult if he’s hurt to identify exactly where the hurt is in his body. He’ll know something’s wrong but then obviously if he’s been playing, and he, you know, maybe you are getting dinner, you know, and the phone’s rung and you’re just talking to someone on the phone and you don’t see that he’s bumped himself, he might not be able to tell where the bump is. So you have to take extra time out to help him in those sorts of situations. And it’s very hard because sometimes the older child might have to wait longer. And then there’s times when the little one is just poottling along quite happy, playing on the Wii and doing his own thing and it’s interrupted because the older child’s had a complete behavioural meltdown over something and he’s ranting and raging and upset. And it affects the younger child and it’s keeping that balance all the time and making sure you’re there for both of them.

Well he was very slow at developing language and then he suddenly lost any language that he had. It just went. He was no longer able to even use the labelling you know, early babble labelling they do and point, don’t they? And it just went. And I noticed that he was very curious around certain small, small things. Even when he was quite little, he would go to the edge of a carpet and trail his hand between the texture of the carpet and the texture of the wooden floor. And do it for ages. He would come and pick up minutiae of little specks on the floor. Crumbs I hadn’t even seen. And I thought, I’ve hoovered today, for heaven’s sake where’s he found that? But they were little minutiae. But he was insistent at giving them to me. He didn’t like anything that disturbed the, the anything around him. And it’s difficult to say because things go in stages as well.

At one stage he didn’t like going through any doors. He was okay really with home doors, where he was part of opening them, or Grandma was opening or whatever. But he hated automatic doors, so it became very difficult, even just to go down and go in and out of supermarkets to shop. He began to take his toys and post them through things. So gaps between the rungs of chairs or between bits of furniture or down between the cooker and the fridge and you know, you just go, you think, Oh he’s playing happily with toys on the floor and then he’d come crawling out into the or tottering out later into the kitchen, and you’d think, Hello! What are you up to? And you’d suddenly think, Oh my God there’s nothing left in the living room floor where he’s been playing. It’s all been posted into things. So it was quite funny really.

But all these sort of things add up to a picture that’s not a usual picture of what children do,

We always have that expectation that we raise our children, we borrow them don’t we for the time we’re privileged to have them and our duty is to see them through to adulthood and if you’ve done your job right, know that they’re stepping out into life with confidence. And knowing that something has happened in their life has curtailed the range of what they can step out into and realising that you want to be supportive of that. Also makes you look at the pattern of what we may be needed to continue to support for those grandchildren knowing that they’ll find some things about coping with life out there much more difficult and I’m sure with the older child he’s actually probably going through his most difficult period in life right now. Because I think school puts a huge demand on children anywhere along the spectrum.

And then the other person who really helped me, and I don’t suppose she’ll ever realise how much she helped me, was one of my friends, who I used to go, with her and her little girl, we used to go, walk down the road together to, you know, Bounce and Rhyme and all these things that mum’s do. And she was a speech and language therapist and I had asked her about, you know, my concerns, because she knew him and she saw him every day. And one day she just phoned me up and she said, Irene I haven’t seen you out, and I know your daughter’s now taking my grandson out.That’s okay, don’t worry. And she said, What’s going on? So I said, Well you know, things have proceeded and as you may expect he has been referred and has now been diagnosed. And she said, How are you? So of course, that’s fatal. You’re always brave, aren’t you, until someone says, How are you? And then of course I just started bawling on the phone. And she was round within ten minutes and despite the fact she had a young family herself. She helped me to say it was alright to grieve, at the diagnosis it was alright to grieve at not seeing him.