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Facing the prospect of adulthood with PDA
  • Amanda
    Posts: 281
    You know sometimes I sit here dying to post but something holds me back. Maybe for me it's the fact that Mark is now 17 and to be honest he's not changed much at all over the last few years. Yes he's matured in some aspects and he very obviously looks more grown up, and being 6ft now doesn't help our situation, but there is so little information out there for parents who have older children, facing adulthood with PDA that often we feel that we are on our own with it.

    With Mark progress has been very slow, and sometimes attempts to run too fast have resulted in us actually taking 5 steps back and as he's grown he's become more avoidant and he hits harder too. It's hard to reason with someone who thinks that the last word always belongs to whoever is bigger, or even who is male, as Mark is very sexist in his understanding.

    One of the things I tell parents when they come into The Maze is that it's quite normal to grieve when you get a diagnosis for your child, one of the things I have realised now is that there have been periods lately where I have greived as much, if not more than I did when Mark was first diagnosed. Maybe I'm wrong, maybe it's not grief but me feeling sorry for myself for all the things that I am not able to do despite the fact that my youngest will be 16 next.
    Things like not being able to 'pop' to the shops when I need to without organising a sitter or taking the boys with me. I never realised what a privilage 'popping' is.
    Things like having to turn down an invite to tea because Mark won't leave the house and there is no one to watch him. Things like having to pre warn anyone that visits that Mark might be rude to them, or worse violent.

    Then theres that awful feeling in the pit of your stomach when you get that phonecall saying that he's gone for someone with scissors or he's hit out at a member of staff at his school. The shame and the fear with knowing without questioning that it took very little for him to go from quiet young man to a stress driven ogre and the fear that he will do someone a damage one day so bad that they will be seriously hurt. There is no worse feeling than knowing that someone you love has hurt someone else. It makes me feel so helpless, and so guilty on his behalf.

    Time and time again I am reminded of how much help he needs. Sometimes we can be out for the day and he will seem so 'normal' and then something as simple as asking him to pass a fork from the top of a food counter sends him into a panic that puts pay to the rest of the day and I know that the people around me don't see this and wonder what much of the fuss is about.

    At 17 he is still a child. Still throws the same tantrums, still watches the same baby TV programmes, still throws his dinner at the wall when he is stressed out. I see no end to anything sometimes. His vocabulary has improved though, he uses words I've never used in my life when he is anxious.

    But I also know that I spent the first few years with Mark insisting that I couldn't cope. And I have.
    I know that I have learned so much, not only about my sons but about their conditions and by taking a good hard look at the way we interact with them we have got by, and I know there were times I felt that we never would. However, most of the good stuff has been around knowing him and learning when to push and when to hide. Getting in his head has been the key to managing him effectively.

    I don't know what the future holds for Mark, to be honest I've never met another like him and with PDA being relatively new there is a real shortage of parents with young people Marks age for me to talk to or to take heart from, it's very hard when there is no one to look up to or draw strength from.

    Forgive me my rambling

  • webbwebb
    Posts: 2,598
    Oh Mandy, I'm so glad you plucked up the courage to write your post. I can tell that it definately came from the heart and you put a lot of thought and effort into it. I wish I knew a parent with a PDA child the same age as Mark as I know you would have so much to share and talk about. I'm sure you must feel such uncertainty about Marks future, my only hope is that his school will give you all the help they can to find him a suitable placement for the future. When will Mark leave school?
    You help so many parents through the MAZE and you have helped me so much this last 2 years, I so wish there was a special someone who could support and advise you with Mark.
    You have done some amazing things within your family and for your friends, this should give you a great sense of achievement and self worth.
    Thankyou for sharing, you know my son is only 13 but I'm glad you wrote about Mark and your feelings; it hasn't made me feel down infact too know someone else feels just like me about thier childs future is helpful and reassuring.
  • mango69
    Posts: 967
    Mandy, you know, you spend so much time and effort helping others on this forum and through the Maze. This is the place where we all gain support from each other when we are going through a 'down' time. You have obviously had a really difficult day with Mark and those days are the days when we all fear the worst for our childrens future. Its good to post when you feel like that because it gets it out of your system and makes you feel stronger for the next day. We all feel like this when the worst of our children's behaviour comes out. There is no answer to the future, only that we can only do our best and try to enjoy the good times when they happen. You have channelled your grief into helping others. We are all here for you, knowing what those days are like, sharing your bad day so it doesn't feel so bad.
  • Amanda
    Posts: 281
    I suppose sometimes that is the problem, I do spend a a lot of time helping parents with children who have just received a diagnosis or who are younger but I almost feel that with my own, because he is so much older it's almost trial and error at times.
    I'm only so effective at helping other parents because of the fact that I made lots of mistakes while learning to parent Mark and his PDA (Which I'd never heard of for the first 12 years of his life)
    As I have said before I am facinated by the subject and I find Mark almost predictable now that I know him so well but it's quite isolating not having someone with kids the same age to talk to. There is so little support out there for any of us and lets face it this is far from the easiest condition to live with for all of the family. Makes me cross when people post that they have been turned down for support of help as the people making these decisions have no idea the impact of living with PDA
  • Mandy, where do I start. I have just become a member of this group as my son, who is 18 years old has been charged with robbery, assault and theft and is due to appear at Crown Court on Thursday. He has insisted he wants to leave home and the Social Worker is coming on Wednesday to "discuss his options" - which she has told me means declaring himself homeless and going into hostel accommodation.

    I understand your frustration - there is nothing out there to help those of us with older children with PDA. My son appears sociable, fools everybody and is reasonably eloquent. As he has done all his life, he falls between all support services and to be honest, I am terrified for him. He is so vulnerable and ill-equipped to deal with life without a tremendous amount of support.

    What gets to me the most is that, whilst at school, he had 22 hours extra support and was eventually statemented (after a massive fight with Notts Education). But as soon as he left school, he was left without any support, which is still true today.

    Sorry for rambling on - this is the first time I have ever replied to a Forum in my life!

    To answer your question - yes there are other parents of older PDA kids out there, but not many of us.

  • webbwebb
    Posts: 2,598
    Hi Jackie
    I am so glad you have joined the forum, welcome and I hope we will be able to support you here although as your son is 18 you will be able to support us with your experiences.
    Please tell us some more about your son if you can, like when did you realise he had PDA and what happend to him after he left school?
    You must be very worried about the Crown Court hearing, what does his solicitor think will happen to him? Has a report been done by the mental health team or a psychologist for the court?
    Sorry for all the questions, this must be a very worrying time for you.
    Take Care....Paula
  • Amanda
    Posts: 281
    Hi Jackie, I'm so glad you posted, I know that it takes great strength to pluck up the courage especially when the subject is so close to your heart.

    I totally understand what you mean by how well our kids are able to hide their problems at times, I suppose in some ways I am lucky that one of Marks major avoidance strategies is to refuse to leave the house, in fact he's like a recluse and won't go anywhere by himself. This puts major strain on us of course but it means that he hasnt been able to get himself into trouble in the outside world. At school he is very violent at times. We are lucky in that he is at one of, if not the best special school for autism available and yet even with all their expertise he has to be sent home due to attacking staff, the most recent incident being Friday when he hit his teacher in the face with a book and actually cut him.

    Someone asked me recently did I think my son was capable of seriously hurting someone. I know he is, and worse if I'm honest in my heart of hearts. The only way forward for Mark is with that tremendous amount of support you mentioned and as you said it isn't there.

    Thank you for plucking up the courage to post, I know I feel better knowing you are there.

    I run a support service in Notts for parents and we have a few parents with PDA kids. You'd be more than welcome to come along and meet some of them and meet me too. I don't have the answers to the questions you probably want to know about the future just like I don't have the answers to my own questions, but you are most definitely not alone, that I promise you, and sometimes just meeting someone who knows, without you having to explain, can help you get through so much

  • Well, thanks for replying.

    To answer some of your questions - my son had 22.5hrs 1 to 1 and was statemented (after a battle!) at school. He was permanently excluded from 1 comprehensive but managed to finish his schooling at a brilliant school at Selston (I recommend it to other PDA parents!). He went to live with his dad at 15 years as I couldn't manage his physical strength. His dad (who has autistic tendencies of his own) basically ignored him for 2 years until the relationship broke down totally last year. He then came back to me, very streetwise, aggressive and used to fighting after spending his time in the city centre.

    The solicitor is trying to get a report together for his court appearance. Funnily enough, he said he has had to deal with this sort of problem regularly - kids with autistic spectrum disorders who get no support when they leave school and end up getting into trouble. Let's hope the judge is as understanding! I'll let you know what happens.

    Although it is very stressful and sad for us, I hope that at the end of the day my son gets the support he needs and that I, quite frankly can no longer provide. I have looked after him all these years and this is the first time I have felt totally out of my depth as I face an aggressive, if bewildered, bully. I no longer have any control over him as he is now classed as an adult - and he uses that.

    Thanks for your support - I feel better already!
  • Amanda
    Posts: 281
    Ah the agression,tell me about it!

    Well done for getting the statement , that can't have been easy.

    Yes there is evidence that many young people with ASD or similar end up in trouble. Why can't they do something to help us live with all this and to protect our young people.
  • Maryann
    Posts: 53
    i remember someone saying to me one time, that they would be at least half that lads in prison are on the spectrum and undiagnosed, i agree.

    amanda i sort of know how you feel where your worrying about adulthood, i am worrying sick about teenage years. i know that girls pda can be very different to boys, but from what i gather teenage years are the worst for girls and adulthood is the worst for boys. i dread puberty, i know whats going to happen, she im gonna tell her something she doesnt like and she will run away. how do you stop a 13/14/15 year old from running away? shes very male influanced already, and she will be very easily led by boys. she wants male attention so badly i think she would do anything for it. how long can i keep her housebound till i start damaging her? although i would like to keep her mainstream i feel she will have to go to a special school secondary wise so she will not have normal teenage peer pressure to conform to their ways. but then i feel she will be missing out. how do you know whats right or wrong for them? also as lesser concern but still a concern how will she cope with periods? although my family starts very late, me, my mum and sister was 16. my daughter has had strong BO for years and has hair starting, her boobs are growing, what if she starts soon? i think maybe she will cope with the pads and stuff like that, but i can just picture her showing everyone at school and being to open with it, when she goes swimming they have to get her ready first and take her out first because she will show off herself inappropriately. ive thought alot about putting her on birth control when she starts secondary school, should i or shouldnt i?

    one of the teaching assistants at school has an adult PDA daughter, ive asked her a tiny bit about her about 4 years ago, but then she said when she was 16 she ran away and her voice started cracking and was about to cry i was to scared to ask what happened and changed the subject, you think i should? i got a horrible feeling she didnt come back. this women in in her 50's or 60's so for it to still affect her like that it must have been bad, unless she had her late in life. maybe she can be of some help to us all if i do ask?
  • Hello there i am new to all of this, but was looking to find a subject that was relevant to me! i think i may need some support and help here, youngest son is just going through the diagnostic procedure, but has been diagnosed with aspergers for years now, PDa was mentioned to me, and in a strange way, it was almost a relief, this seems to be my son!!! .
    He is such a different boy in school, and at home i'm sure you probably all know what we are going through. we were almost at breaking point, total meltdown, scared, absolute devestation, that saddens me to say, has been caused by my sons terrible behaviour. But this young man, i love him so much, yet he appears to hate me, and everything i hold precious and dear. He seems to thrive on upset, and has caused my eldest son to almost breakdown mentally. i am so grateful, to the doctors who believed me, instead of putting me on medication, thinking i was just an over anxious mum. i had to move house and change health authorities before this happened. eldest son now recieving valuable help now, but i just wonder what the future holds for my youngest, he is despite all his problems, very vulnerable, and despite how he feels, or says he feels about me, he needs me for everything!!! thanks for the chance to rant. xxxx
  • webbwebb
    Posts: 2,598
    Hi Lilylaine

    I'm so glad to hear that someone has mentioned PDA to you! It means word is spreading amongst prof's about PDA, a very little known about pervasive developmental disorder.
    I'm also pleased to hear that your Doctor did not label you a neurotic/anxious mother as so many have been labelled in the past!
    I do hope that the diagnostic assessment doesn't take too long and that after the diagnosis your family can access more support.
    It is common for siblings as well as parents to suffer when around such aggression and volatile behaviour. It near broke my heart to see our eldest daughter have panic attacks and depression. However with antidepressants and counselling she has become very strong. This autumn she is off to Uni to study teaching, a sound, healthy, mature, responsible young woman.

    Very often children are diagnosed with Autism or Asperger's but later diagnosed with PDA.
    Our son was diagnosed Autistic when he was 4 yrs, the mainstream school couldn't cope, the MLD special school couldn't cope. At 9 he went to an Autism school and the teachers all agreed he had PDA!

    I love our 13 yr old PDA son to pieces and although he attacks me 20 times a day, like you I know he needs me for almost everything.

    I don't know what the future holds; maybe college, maybe residential but I will do my all to get the appropriate authorities to help us meet his needs.

    I do hope you will find support here and that you can keep on sharing.
    Take Care
  • Hi Paula, i am so glad that you have replied!!! it would appear that this is going to be the diagnosis, and after years of complete hell, i am no longer being labelled a mad mum haha!. It has taken its toll on my eldest son who was studying for his a levels. he had to drop out of college, and started to take anti depressants, and regular visits to a psychiatrist, he is a lovely boy, and didn't deserve the things he went through, and still does. but his state of mind is better, and with counselling has returned to start a new course, i am so very proud to say. we just keep telling him that he will succeed despite and in spite of all of this. what a life story that boy will be able to tell one day! as for me, well my husband and i have seperated, not because we don't love each other, but in order to try and maintain a relationship!! as for little m, as we call him, he thrives on being so incredibly cruel, i can't begin to tell you. but the love never stops, and if i just keep that in mind i can get through another day! i just wish it wasn't so hard. i really appreciate you replying, like i said i feel strangely comforted in having this diagnosis, but i know its just the beginning, school is going to be the biggest challenge, and thinking the way forward, but it looks like i am getting help......finally. thanks so much... how do i find if there is anybody near to me.
  • webbwebb
    Posts: 2,598
    Hi lilylaine

    I'm so sorry that your older son has been through the mill like my daughter, I do hope he recovers quickly and enjoys his new course. Once on anti-depressants she got better within 6 months, within 9 months she was off them. I don't think she fully realises what happened to her but she is much stronger than before she got ill because of the counselling.

    So sorry to hear that you and your husband had to part but I think I understand what you mean. Does it mean that you get some respite when he stays with his dad?

    If you want to find parents who have PDA children and live in Hampshire try checking out the Membership List, look at the headings on the top of the screen.
    OR try using the Noticeboard section and post "Anyone live in Hampshire and want to meet up?"

    I run a support group for parents who have children on the Autistic Spectrum and in the group there are 3 families with a child who has PDA, so you could try a local support group near you. I can tell you how to find one if your interested.

    Take Care
  • Hi Paula
    Thanks so much for your wonderful support, and encouraging news about your daughter, i am glad she has got better, i can truly understand how you must have felt, having to watch her go through that, and yes it does make them stronger, with the right care If these guys can get through this at such a crucial age, then they could just about cope with anything life throws at them, just like their mums. no i don'thave much respite, but we're working on that one!!! M will tell me how much he hates me with the endless round of verbal abuse, and violence, and it seems that i have ended up protecting everyone else around me, because, no one else seems able to cope with all of this, it has taken ages to get my husband to realise that what i really need sometimes is for M just to be taken away, without a drama, without giving any choices, just to do it!! but its getting there. thanks for your help, i will look into a support group, and see if anyone is local, and best of luck with your group
    take care
  • Amanda
    Posts: 281
    My daughter at 14 took some pills because she had had enough she said. I understand how you feel, I really do. I remember how scary it was that my youngest son seemed to accept violence as 'the norm' and when he was picked on at school took it as nothing new because of the abuse inflicted on him by his brother.

    My daughter is now at Uni and though I say so myself shes an exceptional young lady and the experiences she has had have helped make her exceptional. Apart from home and at school now people dont see the agressive side of Mark and wonder what all the fuss is about. They don't see the lust for vengance, the disregard for anyones feelings and the constant demands. I hate that about his PDA.

    you are most definitely not alone. I wish you lived closer. Webb and I are both in Notts and she is a real comfort to me at times, it really helps

  • Thanks Amanda, have posted announcement on announcements to see if anyone is local to me in hampshire. I am so glad i have found you guys, online support is a great thing, its extremely difficult to be sociable at times, with the kind of problems we face!!! Its even more difficult getting people to understand these lovely, cute little people are capable of such terrible behaviour, not many people see it. The worst, thing was it took for my older son to breakdown and seek help, to really make people understand. We moved house and so changed health authorities as this was happening, previously i couldn't get anyone to listen, as younger son had been given a diagnosis of aspergers, so that was that, but as we looked into aspergers it was apparant that there was more to it than that, i just knew. and spent years being made to feel neurotic. but thats all changed now. Thank God, and help, so they say is on its way!! So bless you guys for you support, i am sure you will know that it is so very much appreciated.
    take care
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