A-Z

Paula - Interview 5

Age at interview: 40
Brief Outline: Paula's older son Alex was diagnosed with Asperger syndrome two years ago and her younger son David has been diagnosed with ADD, Oppositional Defiance Disorder, agitated depression, speech dyspraxia and Asperger syndrome over the years. Both boys attend a mainstream secondary school and Paula is still trying to organize appropriate support for David.
Background: Paula, a specialist senior nurse practitioner and teacher, is married and has two sons aged 14 and 12. Ethnic background/nationality: White British.

More about me...

Paula, a specialist nurse practitioner and teacher, and her husband, also a teacher, live with Paula’s two sons from her first marriage' Alex, 14, and David, 12.  While Alex had behavioural issues when he started school, it was only when the family moved to a different area and the boys changed schools after the divorce that both children were flagged up with difficulties. 

Paula didn't know at this point that Alex had been diagnosed with difficulties with semantics and David with speech dyspraxia.  When she went to the school, the SENCO asked if she had thought about Asperger syndrome and so Paula went to the GP to get a referral for a diagnosis. It took a long time before Paula got the diagnosis for both boys because the relevant authorities made mistakes and because her ex-husband resisted the boys getting labelled.

In the meantime, David’s behaviour had deteriorated at school and Paula felt she was being blamed for the boys’ behaviour.  The statementing process for Alex was lengthy and the statutory assessment request was turned down three times.  Alex was diagnosed with Asperger syndrome by a consultant psychiatrist who worked with Paula and an academic working in a well known autistic research unit. 

Even with these diagnoses, however, the school did not provide appropriate support for Alex so Paula took the school to a SENDIST tribunal which found the school had discriminated.  The statutory assessment followed soon after the court case and Alex now has appropriate support at school to enable him to make very good progress.  David is a totally different child from Alex and has also suffered from a lack of appropriate support at school, which is not yet resolved. 

Paula finds that having life very well structured at home suits the boys and she pays close attention to their diets.  She uses herbal and homeopathic remedies and has avoided the use of methylphenidate (Ritalin) or other medication for David’s ADHD.  She describes both boys as wonderful and feels they have been let down badly by the delay in diagnosis and, therefore, the delay in the provision of appropriate support and by the lack of proactive support from their father.

 

Alex and David

Alex and David

SHOW TEXT VERSION
PRINT TRANSCRIPT

They are wonderful. They are brilliant. They are just my boys. I mean Alex and David function so very well that people generally don’t know that they have got anything... After about two or three visits they would see that there was something but they couldn’t quite work out what it is. I mean we have visual prompts around the house. They have got a list that I keep on their computer, so before they are allowed to sit at their computer, they have got to go through their job list. And David tells everyone about all these terrible jobs that he has, you know, and they say, oh when he went to CFCS. “I have to do my jobs.” And I am sure they were thinking, she’s got them working as slaves, you know. And they would say, “Well what are the jobs David?” “I have to wash my face and my teeth.” And all these things, so they know what they have to do and there’s all these visual prompts that they function at a very high level. David the more stimulated, he is a bit of a whirling dervish really.

So you have to sort of pull him right back down. But with homeopathic remedies and things, he is okay and he is in a very controlled environment. I mean as soon as he has an audience, David, he becomes a bit of an actor. So you would see it with David more than you would see it with Alex, Alex is just a cool dude and very laid back and he is okay.
 

Paula took the school to tribunal when her son did not get the support he was entitled to as he...

Paula took the school to tribunal when her son did not get the support he was entitled to as he...

SHOW TEXT VERSION
PRINT TRANSCRIPT
And then all of a sudden three months later the head teacher phoned me up to exclude Alex and it turned out that this was in the October and all of Alex’s support that he received at school action plus which is supposed to be five hours a week (and the ten hours extra help*), but he wasn’t even getting that. The specialist teacher team had said that Alex needed help moving around the corridors. If you think you have got 1300 children in a school that was built 50 years ago, in corridors that are too small, and he has a real hypersensitivity to sound so every time the bells were going it was irritating him. And the other boys in the class were kicking him, tripping him up, Alex had a bag. He has a laptop, he has all, you know, PE kit. So he turned round and bashed one of them and so he was excluded for that. But my question was, “Well where is his LSA where is his support that you say that he doesn’t need, but it is in this report from you know, the LEA says, he needs help in the corridors.” “Oh we have taken his support away. It has gone to the year sevens.” And I said, “No, no, no, that is Alex’s support.” (Again the headteacher was a relic from Thatcher’s Britain; very autonomous and Dickensian.*)
 
Anyway I had had enough by then. I contacted the Children’s Legal Centre is [town] and a very good solicitor there took the case on and we took the school to the SENDIST Tribunal for disability discrimination and a finding was recorded against the school.
 

Paula thinks it is difficult for teachers to be able to teach a class of thirty children with...

Paula thinks it is difficult for teachers to be able to teach a class of thirty children with...

SHOW TEXT VERSION
PRINT TRANSCRIPT
But with David it didn’t really help him a great deal. I think because again he is so nearly normal and probably there are so many millions of kids that have Asperger's and don’t know it or are on the spectrum and don’t really know it. They are being taught by teachers who don’t really have a good enough grasp of special needs and it is difficult for the teachers, you know if you train as a teacher and I trained as teacher a couple of years ago and in a class of 30 kids you might have one kid with Downs Syndrome, two with dyslexia, one with speech and language delay. I mean there are so many things, and you need to know so many things about them that it is difficult to get your head round, especially if you have got a bit of a smart arse kid, who things he knows anything and everything and puts his hand up every five minutes.
 
You know what David needs is to be sat under a teacher’s nose on his own with a lump of blue tack to fiddle with and then he gets on and does his work, but you can do as many round robins with the teachers as you like, but the information isn’t getting through and there is always problems with behaviour.
 

Paula felt “incredible relief” to get the diagnosis as she had been questioning her parenting...

Paula felt “incredible relief” to get the diagnosis as she had been questioning her parenting...

SHOW TEXT VERSION
PRINT TRANSCRIPT
The report from [doctor] I felt incredible relief because you know, if people tell you that you are a shit parent often enough you think you are. I mean I kind of knew that I wasn’t, you know, I don’t drink, I don’t smoke. I don’t take drugs. I don’t do any bad things. I always think about my kids. I always try and enable them. So I know that I am doing the right thing. But at the back of my mind I was thinking is it because of the divorce? Is it genetic? Is it me? Is it you know, what have I done wrong? Is it because I went to a wedding when I was pregnant with Alex and I drank? Is it that? Have they got fetal alcohol syndrome? Have they got this? You know you are forever sort of trying to justify your own existence really when you have kids with special needs. I think that is what it is all about really.
 

Paula’s son loved moaning about her during their systemic family therapy sessions.

Paula’s son loved moaning about her during their systemic family therapy sessions.

SHOW TEXT VERSION
PRINT TRANSCRIPT
So yes, then we went to CFCS and we talked about David’s anger, because you know he can’t keep that under control. He gets frustrated and socially he is very, very immature. You know he really does do the Kevin and Perry thing. You know if he can’t get his own way, “Oh oh.” He just stops. He does his piano practice, “mm, mm, mm, mm”. And everything is very, you know, it is in Technicolor with this kid. There are no watercolours and black and white. It is bang, it is in, you know. So anyway we had this systemic family therapy which he loved because it was all being recorded and so he used to sort of, “Yes, mm, and my mum is horrible to meee…” And so you would get all this sort of shit that was going on, all the time bless him.
 

Paula gives her children various homeopathic remedies but does not do anything to “change their...

Paula gives her children various homeopathic remedies but does not do anything to “change their...

SHOW TEXT VERSION
PRINT TRANSCRIPT
What they need to be doing is they need to be managing David better because I can manage him. So … and I have him all the time. But he does have… they both have Cognis which is a herbal remedy, like a flower remedy, they have Autism Combo which again is made up by the homeopath. They take, oh all sorts of different things, they take Chlorum which because they both swim for a club, they are in the Sprint League as well, so they are forever sort of breathing in the chlorine when they are sort of come up and they are breathing.
 
What else do they have? All sorts of homeopathic remedies. They don’t the Omega 3, 6, and 9 any more but we do have organic fish and things like that. I don’t like them having the Omega although it probably does improve their concentration. It also means in a roundabout way, sorry, this is taking so long to answer. They – when their food intolerances were done they both ingested mercury. Now whether that was from the inoculations that they had both had or whether that is from mercury that is in the fish oil, from where the fish are in horrible bits of sea where there is so many toxins anyway. So I immediately put a stop to that and when we had them tested again the mercury had lowered. So yes, we do have, all sorts of remedies here, but we don’t do anything that is chemically going to change their neurotransmitters because they are who they are.
 

Paula describes a part of the process of getting her sons diagnosed which went on for several years.

Paula describes a part of the process of getting her sons diagnosed which went on for several years.

SHOW TEXT VERSION
PRINT TRANSCRIPT
David was getting into trouble; he was getting detentions, he was absconding from school, saying to the teacher very convincingly that mummy was collecting him early for an appointment and would walk out. And the school would let him walk out and I was eight miles away in the Community Mental Health Team. I mean I was “aghhh”, when I found out. I obviously you know annihilated David, annihilated the school and everything else and it was “David hasn’t got any problems, David is fine. He is just silly. And I kept thinking. “Whoa, I don’t think so. I think there is definitely something here.”
 
So we went back to see [doctor]. At the same time we were going up to [hospital] to get that chromosome diversion thing done so that came up and so we knew then from seeing Dr… some guy in [hospital] about genetics, that there was definitely behaviour difficulties that were linked to Asperger's, autism and mental health problems on my side of the family and he had that. But I kept thinking there is definitely something else going on and it was almost as if it was a bit… it looked I suppose as if I had Munchausen’s or something, because I knew there was something. You know we couldn’t have this kid with an IQ of 117 failing. Because 25 years ago this world could take people like David, because I am like David, you know, we had a place in society. These days you are either a Chav or you are an academic. And there is kind of no middle ground for these sort of kids and which way are they going to go? They are a bit vulnerable so he needed the help.
 
Saw the Community Paediatrician and she said, “We will do the Connors rating scale.” So we did the Connors rating scale and I marked everything as if, as it was, that David really had quite a bit of ADD and ADHD. The school who were under reporting everything, because if they highlighted a concern they would have to act on it and put help in said, “Oh not a problem. He is wonderful.” So we ended up getting a … So we went back and she said, “Well no, because they are saying he is not a problem. Bring the father along.” So the next appointment we brought the father along who sat there, while David was stimming, he was doing all this, “wa wa wa wa wa”, and he was on a whirly chair, whirling around in the office and my ex husband said, “There is nothing wrong with him. It is normal behaviour. It is just because he is bored. I know because I am a teacher. Nothing wrong with him.” So that was another six months without a bloody diagnosis. And I thought I can’t be doing with this.
 

Paula has worked so long in mental health she feels her norms and values have become blurred so...

Paula has worked so long in mental health she feels her norms and values have become blurred so...

SHOW TEXT VERSION
PRINT TRANSCRIPT
Is there anything that in particular that helped you deal with the whole experience?
 
I don’t think so. I think as a parent if you are reasonably intelligent and with access to the internet and stuff like that, you just deal with it and get on with it. I think probably working in mental health for as long as I have has sent me a bit mad [laughs] and my norms and values are kind of blurred and I think you find that a lot with mental health people. I am mental health people, I am very mental. That because you see so much of what is not normal that your values do change over time so I am not really fazed by anything, you know, I am kind of, I am never really shocked about things that happen, you know kids that get abused or whatever, I am never shocked by that because I used to see and deal with a lot of the emotional stuff with that in my own childhood and in families that I would deal with through my work.
 
And then when I moved over to the Autistic Society, it was 24/7 autism, do you know what I mean? So I have been there, seen it, done it kind of thing, not that every experience is very real for every person. But I kind of know with … as soon as they start talking and you are talking about whether it is education or whether it is about an ex husband or whether it is about difficulties in relationships, you know where it is going. I have been a nurse since I was 18 years old and I am 40 now. So 22 years experience of working in mental health, and being married in mental health and all of those things to sort of help me understand things better.
Previous Page
Next Page