Dolores Story

Dolores's story

This interview is with a mum who has two children on the Autistic spectrum. Dylan who is 8 and Samantha, 5. She talks about their conditions and how it has had an impact on her family life.

Hello Dolores, tell me a bit about your children Dylan and Samantha, and how you found out that they were both on the Autistic Spectrum?

Dylan is 8, coming 9 in June, they are both June birthdays. Samantha is 5. I suppose because Dylan was my first child, it took longer for me to realise that he wasn’t doing things the same as other children.

Did he reach his milestones as a baby? Did you have a normal birth?

I had elective caesareans with both of them, Dylan because I was in hospital for four days before he was born and it was sort of taken out of my hands, the consultant decided enough was enough. Dylan’s heart rate was up and down, and I was taken in to keep an eye on him. They had given me pessaries over and over again but nothing happened so in the end I had a caesarean.

As for milestones, he did reach them if you are talking about reaching out for things, babbling, crawling, well he was never much of a crawler, but he did reach all the other milestones. He was late walking though, he spent a long time walking around furniture and was about 16 or 17 months before he took his first steps. Looking back, he seemed scared to let go of the furniture, and now I can see the explanation for it.

When did you first notice that Dylan was different from other children?

When I took him to the park he wasn’t able to play like other children, he was just so anxious about having both feet off the ground and, climbing frames, he still can’t do them. He can climb up things but he can’t actually get down. So when he was 3 and I took him to the park I would end up at the top of the climbing frame with him, and it was pretty pointless to take him because of that. I noticed the difference big time. Plus there were other kids in the park that you could have a conversation with and at 3 Dylan was still babbling and saying unfamiliar things, such as uice for juice, or he would mostly point at things that he wanted rather than talk to me. As soon as he came to toddler age really, even at mums and toddlers I noticed a difference. But I wasn’t really in those social situations throughout the day, and I never once thought Autism. I just thought he had a delay of some sort and that he would catch up, that it was being my only child as Samantha wasn’t born until before Dylan’s third birthday. I actually thought that having a brother or sister would bring him on a little bit as he would have someone to copy. And I also put a lot of it on myself, thinking that I had mollycoddled him a bit too much.

I also put his repetitiveness down to him enjoying things a lot, because he would have watched Toy Story on DVD over and over again. But it’s funny because I can’t get Samantha to watch even one DVD, and looking back I used to think “Wow” what a good child he was. He watched Toy Story so much and put on an American accent, and almost acted out all the parts, he knew it off by heart. So looking back now that was probably a major sign, and the first day the consultant paediatrician came out to access him he had things lined up on the fireplace. That was the first day I heard the word Autism.

What did the consultant say?

It was just before she left, she asked me if I’d ever heard of Autism. She was actually lovely, she got down on the floor with him and done loads of play with him. By that stage he had been seeing a play therapist on a weekly basis for about 6 weeks; the therapist came out to the house for an hour, just to improve his play and social skills.

After the consultant has spent that hour with him, and asked me if I’d heard of Autism, and I said yes, I had. She then asked me what I knew about it and all I knew really was that they can be obsessed about things but I was very naive about what Autism was and I couldn’t have explained to anyone exactly what it was. I had a very vague idea really. The doctor said that he was showing some traits on the Autistic Spectrum, and she said she was going to do lots more assessments on him, at home and in school just to see him in different environments. She also put him forward for an ASD clinic. It probably took about a year from that first assessment until we went to the ASD clinic. But between the first meeting and the clinic the consultant came out to the house maybe 3 or 4 more times. I also did a bit of research myself, and I thought to myself that he probably was Autistic. He was also having regular speech therapy at this stage.

What happened at the Autistic clinic?

Myself and my husband went to the clinic, and we spent the whole morning. They went right back to the birth and they ask about family history, trying to find out if anyone in the family had Autism. The clinic was out at the Grove in Ballynahinch, and they did a lot of assessments on him, some of which were through a two way mirror, so that we could watch him but he didn’t know we were there. Then at the end of it they went off for a while and when they came back they said he was definitely on the spectrum and that he would need a lot of support. They also give me a few leaflets for Autism NI which was called PAPA then, and told me that I should get in touch with them as I would get to speak to other parents.

After that it was all a bit of a rush as Dylan was due to start primary school, and it was a mainstream school. The consultant felt too strongly to let him go into a mainstream class so she made a few phone calls. She wasn’t even sure what would be the best school for him, but she settled on a speech and language unit attached to a primary school. He started the unit at Knockmore, Lisburn in September. He was just 4, the youngest in his class because of when his birthday falls.

Did he have any speech at the age of 4?

He had a little, it wasn’t very recognisable, but his nursery teacher was fantastic with him, at the end of the year she could understand what he was trying to tell her because she spent so much time with him. But if he was out in public and talked to a stranger, then they wouldn’t be able to understand him. He definitely had a lot of pronunciation problems and had problems knowing what tone to use. I think by the time he started P1 he was probably using more words than sentences. Knockmore was great for him as the speech therapists are on site, he had loads of speech therapy there and within a year I could see a big change in him. The social communication unit was what he needed, there were only 6 in his class, and they all had a diagnosis of Autism but were all completely individual. The teacher was completely zoned in on Autism, and she just seemed to know what made them tick. For example Dylan got really anxious in the lunch room and didn’t like the smell of other people’s lunches, in fact he still has this problem to this day, but the teacher recognised this problem and made sure Dylan was able to eat his lunch away from the smells. She also did a lot of taste tests on him, getting him to smell foods and lick food, because his diet is very non changeable. Actually he has a horrendous diet!

Are you happy with the route that you went down with education?

The fact that my daughter Samantha is at a mainstream school, she copes with it but just about copes with it, I can now say that I know Dylan wouldn’t have coped with it, because they are both so different. And I have to always thank Dr Stanfield (the consultant) as without her help at the beginning he would have been at mainstream. If he had started at a mainstream and had to change, he wouldn’t have coped because he doesn’t cope with change. And when it comes to him moving to high school I’m not even sure that he will be able to go to a mainstream school. He’s in P5 now so when he gets into P6 I’m going to start looking into schools in the area that have an ASD unit attached to them. I don’t think he could cope with the volume of pupils, but he probably could educationally wise in theory. If he was overwhelmed by the school though I think his education would suffer. This happened when he had to move from Knockmore to Belvoir (Knockmore only covers Key Stage 1), it took him nearly a full academic year to adjust to the change. My heart is telling me to go with his emotional needs for secondary school and to send him somewhere that has small classes.

That decision, the teachers have a lot of input into where he goes. When he moved from Knockmore to Belvoir his speech therapist and an educational psychologist felt quite strongly that he still needed more therapy, and because of his anxieties he still needed a small classroom. He almost needs one on one attention.

You mentioned he had a hard time moving from one school to another, what happened?

It was horrendous, and I sort of know what’s ahead of us when he moves next time. It was awful for us as a family, Dylan created an OCD and we had to go down the route of making sure there was nothing wrong with him medically. His GP had an idea that it was a coping mechanism for how anxious he was. We had to in the end give him medication, an anti-depressant, to try and get him to stop obsessing. It worked to an extent, it hasn’t got rid completely of his OCD but it has helped him a lot.

Does he still take the medication?

No he doesn’t, but we are considering putting him back on it because he is starting to show signs of extreme anxiety. I was against him going onto medication at the start because I wanted to deal with it myself, but it just wasn’t happening. It was such hard work, he was completely distracted and wasn’t learning anything being sent to school in that state. So if he ever had to go back on the medication I wouldn’t mind. If something helps your child to function then it isn’t a bad thing. I will never understand what goes on in his head, the way he thinks about things and the way he sees things because he has Autism, I just have to try and cope with it.

How is his speech now?

His speech is very good now, the problem is his tone, he doesn’t use appropriate tone when he is talking to people and he talks very loudly. It’s almost as if he doesn’t hear himself speak, and that is part of his Autism. He’s been getting loads of work on sound definition to help him know what way to speak out in public. But because Dylan doesn’t realise that he is loud, this has been difficult for him to change. Even at home I have to say to him to speak more quietly. He is working in group speech therapy for this now, but it may never be completely corrected because of his condition. People do say there is an “Autistic talk” and I feel that Dylan has that talk. If he doesn’t know that how he speaks is wrong, so how can he correct it if he doesn’t know? I really notice it when we are out in public, he will be very loud when he’s ordering food or in a shop.

What about other people then when you are out and about, are they understanding?

Staff in places has been fine, and this is probably because Dylan will only go to one or two places when we are out, and they know him now, they almost seem to know now that he is Autistic. Customers are different, they tend to stare. That can be annoying, but I can’t change who he is, and I wouldn’t want to as I think he is a real individual. Sometimes he makes me laugh with the way he talks about the world and sees things, he is very straightforward and says things how it is. If I ask him how I look and he doesn’t think I look good, he’ll just say that. In his world it doesn’t make sense to say something that isn’t true. That sort of worries me when he grows up and goes out into the big bad world, how will others react to him being so straightforward?

Tell me a bit about Samantha then, how does her Autism differ from Dylan’s?

To me Samantha was a typical little girl, she reached all her milestones and was very vocal, and she also used to sing all the time. So I didn’t have any concerns about her, not in academic terms but I always thought she was very unsociable outside the house. When I brought her to mothers and toddlers she really struggled. I put this down to the fact that her older brother had Autism so she was just copying him. Then when she went to nursery the teacher would give her instructions and she would have stayed with those instructions until she was told she could do something else. For example, if she was told to do a jigsaw she would do all the jigsaws on the table and stand and wait for the next instruction. She didn’t know it was ok to move or to do something else, she didn’t know how to use her initiative. There were a few tools then that she didn’t have and I gave the consultant a call to talk to her about my concerns.

What happened next?

Well Dr Stanfield came out to see her, and she said she could see certain Autistic traits, but she wanted to do more assessments. All her school work was great but she played with her hand in her mouth, she had extreme shyness socially. She started mainstream school and was there when she was diagnosed, she was 4 when that happened. We went to the ASD clinic like Dylan had done, and she was diagnosed that day.

Did you expect the diagnosis?

I was really torn because I didn’t know what would happen. I know of children who went to the clinic and it came back inconclusive, because both the specialists have to agree on the day, and it had taken quite a few visits to get a diagnosis. I had this gut feeling that only one of them would think she was Autistic. So that day my husband Sam didn’t book the day off work and I went on my own because I didn’t think they would tell me she was Autistic. They told me almost straight away that she was, and I thought, “She can’t be!”. I told the doctor that she wasn’t, how could she be? But they explained that even though academically she was above average, socially that’s where her problems lay. In fact in school she is now in her second year she still can’t go out and initiate play in the playground. She will stay with me until the teacher comes and gets her from me. She is very timid, but at home she is the absolute opposite. She is so loud! She is very overpowering and also quite intimidating for Dylan.

So they are very different?

Yes, they really are two different characters. Samantha can be very hard work as she is very demanding, she wants a lot of one on one attention from me and it’s quite draining. Dylan will sit and watch a DVD from start to finish, Samantha has never done that. We work with schedules for her where she has to do something for a certain period of time, but sometimes they get threw at me! So they are very different, but it’s when we take them out socially that you can see the Autism, they really have poor social skills.

Do they play with other kids in the area?

Sometimes Samantha will play with the 2 little boys next door in the front garden but as soon as anyone else comes along she comes in. Dylan never goes out the front. The 2 of them are very solitary here, they don’t even play together. In the back garden they will play on their own, as Dylan doesn’t like playing out there when Samantha is there.

How do you and your husband manage things then?

A lot of our activities we do separately; I do something with Samantha and my husband Sam goes out with Dylan. We do feel we are missing out at times. Over the summer we are going to try and take them on a holiday, but then again we aren’t sure whether we want to go down that route because it is really hard work.

Have you ever been offered respite or any service like that?

Never, we don’t even have a social worker. I have applied for a befriender from the National Autistic Society but the waiting list is incredibly long and they have to find someone who suits my two and their needs. Something like that would be fantastic, if someone could come into the house. I wouldn’t necessarily want anyone to take them out, but just to have someone come into the house and spend time with Samantha one on one would be great. By the end of the day she has me completely drained! I work 12 hours a week in the evening, and sometimes I go into work so physically tired that I really don’t want to be there, but at the same time I am glad to be there because it’s a break! I would be lost without my work, as we don’t have a social life, we don’t have anyone who we can leave the kids with.

And have you found the parent support groups through Autism NI helpful?

Oh yes definitely. You don’t always get the chance to meet other parents at the school but it’s great to meet them at the groups. And also I love to see the older kids with Autism and how they cope. Often there are a lot of younger kids, and not enough older as they aren’t interested in the meetings, but I find it helpful to see them. There have been a few programmes on TV about Autistic young adults as well that I’ve loved watching. It helps me see how my two may end up when they grow up. It is an invisible disability, and programmes like that raise awareness of it.

Thanks so much for your time Dolores, it’s been great and very interesting.

23rd April 2010

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kelly@parents-stories.co.uk