Irene: Interview 02

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.

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. 

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 often…Obviously 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.

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.

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 they… at 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. 

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.

And so some people are very skilled at giving you support and other people perhaps are blunter, and sometimes if people come out with things… well, 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?’” 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 done… well 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 her… when 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 us”. 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 not… so 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. 

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. 

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 and… and 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.