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Desperate for some advice on PDA diagnosis for preschooler
  • jp
    Posts: 5
    I'm new to this forum and have joined to ask advice regarding my daughter who will be 4 in October. She's currently at risk of exclusion from her private day nursery as her behaviour escalated last week and she totally trashed the entire nursery and hurt 4 members of staff. They called me in to calm her and help.
    They are at a loss about how to help her - but in my opinion she ticks nearly all the PDA boxes - although has some relatively OK days when it's hard to distiguish 'normal' 3 year old behaviour from her behaviour. She just seems to be extreme in everything and has an intense need to control everything. Without using all the strategies I can muster, evryday would be full of confrontation.
    My daughter does not have any learning disablities - in fact is very bright - but really strugles behaviourally and socially. I have an appointment with our local child development unit next week- but would really welcome some advice and support as I feel exhausted. I teach full time and am really worreied that I'll not be able to return to work as I could end up with no childcare.
    I'm in Coventry - any other parents of kids with PDA locally?
    jp :?
  • doodledo
    Posts: 13
    Hi and welcome, we live in leamington spa and were fortunate to get an appointment at warwick hospitals child development unit back when our son was nearly 3, he'll be 7 this november. He was fortunate to get a place at the local special nursery which continued to assess him for the year before he was due to go to school and they advised mainstream with specialist imput. It wasnt until he was 4 that they diagnosed him with PDA where as the year before when he was 3 they called it Complex Social Communication Disorder. We noticed something was up with our sons behaviour when he was about 18 months, although some of the amazing agility and strenghth he had as a baby I think also coinsides now. He reached all his milestones crawling, walking , he could climb out of his cot at 9 months, he had it mastered down to a fine art!!! He was never really interested in toys he loved destructing things our theory is he has a scientific mind and likes to see how things are made! His speech and language delay has caused him alot of major frustrations however he would never go to other people form an early age ,it really used to distress him. Eye contact proved a problem around 2 and a 1/2 years. Anyone that looked at him either to greet or smile he would just go crazy. If anyone went up close to say hello or something they would just have got a major clout round the face, anyone who visited the house would have whatever was in his sight hurled at them. Because of the eyecontact thing and the dislike of change and major outbursts it was our health visitor that referred us to our local CDC.
    Hopefully you are on the right track to getting your daughter assessed, Our son Jay who will be going into year 2 in september had had a really positive year up until the last few weeks of term where he produced some really challenging behaviour, we were called in every day for 2 weeks to go in and try and calm down or bring home.
    Even though he is statemented with his behavioural and social needs the teachers can come to a point where they are stuck with what to do. Your daughter sounds a bit stronger than the average 4 year old. People used to quiz Jays diagnosis as he didnt present the traits all the time and it used to play on our mind a bit too. People assume its your parenting at first!
    I did get ur private message but thought id reply here first, dont worry to much you seem to have a bleak outlook which was so similar to ours before our son got assessed. If your daughter does have PDA or any of the other ASDs OR PDDs it is looked upon as a disabilty and you will get some benefits so you may be able to cut down some of your hours, just an idea. We have specialist help going into our sons school in september as a result of some of the behaviour he produced in the last few weeks of term. Its got to the stage alot like yours where there is a safety issue for himself and others. Ill keep you posted. Jeanette where abouts in Cov are you, you are probably only up the road. dont hesitate to contact or private message for whatever reason over the next few weeks. You need to urge that she is assessed, good luck and we are all here for you . Ps Have you any other children, we have 3 strapping boys here one whos 7, Jay who is 6 and has PDA and littlen whos 4. You are not alone, speak soon Lisa :D
  • dirtmother
    Posts: 897
    So interesting - people used to talk about problems with change when it was more subtle than that - he was up for change if it was something he wanted to do and he wasn't doing something he really wanted to do - and also if he understood what the change was. I saw staff flapping around at school over some unforeseen thing where they were going to have to move classrooms and going "Ooh, he can't cope with change" - but no-one had explained to him what was going on. He was perfectly happy with a different classroom. Like your son by the sound of it, he has a significant level of language difficulty - I think I'd get in a worse flap if I was him in some of the situations where people don't take care to ensure he has understood - he cares less about being compliant of course!

    The eye contact was interesting too - when we were first wondering about autism, people would say that his eye contact was fine, which it was. However, he has learned to avoid eye contact as a means of avoiding being asked to do something - highly socially skilled, just like in a meeting when someone asks for volunteers. He also avoids eye contact with those who are a bit keen. Sometimes now I think he knows that he has to shut down a channel in order to process language too (just as he will ask people to be quiet when he is trying to concentrate on a physical task like getting dressed)

    I've heard there are 9 children in Warwickshire LEA with a PDA diagnosis. I think end of term can be especially tough for a child who doesn't like change as there are often changes and unpredictability in the final weeks (and the staff are tired) Does your son have an area he can go to when it all gets too much for him? I am really pleased that mine is keeping the same teacher but with a new classroom which has a really good area for him to retreat to and I think they will probably find him underneath the bean bags quite often being Mr Sensory Issues. (I expect it would really do him good for someone to then sit on the bean bags but that could get out of hand!)

    Have had fun afternoon buying him new shoes - Ministry of Silly Walks, plus licking and spitting at the mirrors in the shop and yelling when I asked him not to, nor to dismantle the foot gauge. The assistant said "Quite a character isn't he?"
  • jp
    Posts: 5
    Thanks for your replies. My daughter is so annoyingly complex - like you mention, dirtmother, she can have good eye contact - but is very skilled at not having eye contact at all. When she was just 12 months old she used to close her eyes really tightly and shut us out. Then she started humming loudly. When they changed the room around at Nursery without telling her she head banged for hours - cracking her head onto hard surfaces. She went to a paediatrician but they thought it might be a result of previoue ear infections - I was never convinced. Now - if they tell her changeds, she's generally OK. She has a space to run to and a special cushion, but doesn't yet have the skills to get there all the times she needs it.
    Have started a home school diary, which she's ripped up this morning - she's very clear she doesn't want us to communicate. With visitors or going out, she takes an instant like or dislike to people. If she likes them, she might give them a quick sideways glance and if they leave her well alone, she'll start to engage with them if they're doing something that looks intreesting. Otherwise (e.g. with the grandparents she refuses to look at them., talk to them or engage at all. They comment on it (agh) and it escalates. I have a couple of regular friends who now know her well adn all is OK. She gets on very well with oldre kids though - but they tend to do what she wants all the time?
    I have a tennage daughter (14yrs) who is really fed up about life with us right now as my little on seems to dictate (or try to) everything. I'm continually exhausted and struggling to divide my attention. Can't wait for Child Development meeting. ALl other milestones normal though - but she went through months of refusing to speak - I taught her sign language - we she uses when sh'e overloaded to this day.
    Jp
  • webbwebb
    Posts: 2,565
    Hi jp

    My son with PDA is now 13 but your post sure took me back a few years!
    I agree with you and love your comment "annoyingly complexed"!
    I think you gave a brilliant description of your daughter in your posts and I think you could definately be on the right track! Lets hope you get a good professional at the child development centre who can diagnose all pervasive develpment disorders. Sometimes you may have to go to the centre more than once for them to give you an accurate diagnosis.

    I think its great that you have already realised what may be wrong with your daughter, the earlier you can get a diagnosis the better.

    You must be very worried about your job security and it is very hard trying to balance work with a special needs child to care for. Talk to your employer, be upfront about the situation and maybe they will be understanding. Your daughter may improve as she gets older and settles into school with support. If there is still a problem then maybe you could consider part time as financially you will probably get Disability Living Allowance.

    As you already know it can be very stressful for parents with complexed children, you have to think of your health as well as that of your child.

    Next week at the child development centre make sure you take another adult with you to support you and back you up. Also make sure you get time with the prof's to talk about your daughter, you can't be brutaley honest about your daughters behaviour in front of her.

    Hope all goes well, we are here if you need us!
    Paula
  • Connor
    Posts: 111
    Sorry for a very quick reply I have scanned the replies as J is around and if I spend too long doing this he will kick off. What I want to say is thankyou all once again for making me feel like I not alone and that other children are like Jack.
    I just come back from a camping break on dartmoor with friends and have spent most of the time either crying or wanting to crawl under a stone with Jack so no-one else had to suffer him. My friends were all very understanding but that only helps so much. Some of his misdemeanors have included peeing on my friends daughter as she ate her tea, peeing in the biscuit tin, throwing childrens shoes into brambles, spitting, gently kicking my friends two year old on the head ' because he was sitting there' to name but a few.
    By the way I wish you all the best for september! I was a part time teacher but packed it in as it was too much with Jack but hopefully it will work out for you. Now we get dla and carers allowance. J has ok days like your daughter and other days he is totally out of control. We were called in lots of times at his previous school. We pushed very hard to get him a statement by the time he got to school which thankfully happened, as a teacher yourself you know how hard this gets once they are at school. He went to a child development centre and fortunately we had a brilliant chilminder. He had his assessment and confirmation of pda this june. I sorry it all sounds so bleak but he is definitely getting more good days and more responsive as he gats older and his understanding has matured.
    Aint life sweet.
    Connor
  • jp
    Posts: 5
    :D HI Connor - your post made me smile - so like my little one - who peed down the front of the new babysitter - someone from work who assured me they'd be just fine and has never come back since!!!!!!!!!!!
    I had my letter from child development today - suggesting my little girl may be on the spectrum - the initial meeting was positive - now have to have observations and speech and language assessments. All as I start back to school today. Hope she can hold out at Nursery long enough to get support - or I'm going to have to give up work?
    Thank you so much for your post - it really does help not to feel alone.
    Have also read the explosive chilkd book that lots of people recommended - some good ideas that work with my little one - but not easy to implement when I'm late for work and T's pushing all my buttons.
  • Garden
    Posts: 329
    Hi JP

    Just wanted to say that private nurseries are often not geared up to handling children with complex special needs. I gave up work when it became clear that our children were not going to cope with any form of childcare - and I was struggling to cope with them (I have another daughter with ADHD as well as the one with PDA - they are adopted).

    But mainstream schooling has been a good experience for us. Still I can't work though. The sheer number of meetings I have to attend for one thing. But mainly because our PDA daughter can cope with school if I drop her off and pick her up and let her come home and just crash and do her own thing (usually role playing in her room or watching tv). She can't cope with much more than that - visits to friends will inevitably produce a mega tantrum afterwards. She stopped any sort of after school activity for three years because it was all too much for her, but now she goes to a dance club one day and a martial arts club another day. But I am VERY conscious of her limits and won't put too many demands on her or we get the terrible tantrums - the good news is that if I keep her stress levels down then we're generally okay. But it does need me to be around a lot to keep her that way.

    Sorry, that's probably not very promising sounding. But maybe your daughter has some ideas herself about what would work for her? Our daughter is often able to tell us what she will be able to tolerate or what would make sth possible.

    Best wishes, Garden
  • Connor
    Posts: 111
    Hi JP
    I was relieved to find that my last posting made you smile I was worried it may have made you more depressed. How are things now you back at work?
    We have a new trick that may work and indeed is suggested for pda children and that is the use of a toy, at present it is Po, to be the medium when making demands on Jack. He also uses it and last nifgt Po requeasted, through me , that J settled quickly and quietly as he was very tired and didnt like shouting. Ten minutes later J was whispering down the stairs that he needed the toilet but had to be quick as Po wanted a cuddle. In fact Po has gone to school today to watch Jack, we had a bad day yesterday after a week of 'angel jack' to see what Jack does at school and to make sure there was no disruption. I may well be telling you later that this didnt work, such is the nature of pda.
    If you need to talk private message me and i will give you my contact details.
    Keep smiling and enjoy the challenges, I am sure they will make us stronger!
    Adele
  • jp
    Posts: 5
    :shock: Mm - work - a tough one. Not sure I can sustain it - but don't wnat to lose my home either. Need to wait until child development report. Had a real shock on Friday though - T's Nursery will close in 8 weeks and I have no alternative childcare. It's really frustrating as we're part way through the process of her assessment and I don't even know what I'm really looking for.
    Thanks for the idea of a toy - I have tried using puppets before and although they work sometimes, she usually hides those that ask her to do things she doesn't want to. I find stuff all over the house!!!
    My little girl is very stressed right now - like you I had an angelic week, followed by a major outburst yesterday. Once she gets "heated" nothing seems to stop her and even restraint doesn't work. I make sure she's somewhere she can't hurt herself now and let her bang, shout, scream and trash things until she calms. If I go near her she hurts me and she's so strong ( she knocked my friend over). Usually I feel strong in myself, but after the nursery news, I feel exhausted and inadequate. The crazy thing is that I teach kids with special needs and face this stuff everyday - but can't seem to figure out my own child. How can they be so angeli/ordinary one day and then so difficult the next? No strategy seems to keep working - grrr it's frustrating isn't it? I guess you are all further down this road than me. I really aprreciate the replies - I'm struggling to get support and reluctant to let people I work with know how challenging my precious daughter can be.
    Keep in touch
    Jp
  • Connor
    Posts: 111
    Hi JP
    Sorry to hear about your nursery news and hope you can get something sorted soon. We were lucky to get an excellent childminder and I think that this environment suited J better at that time, ask around.
    J is having a really bad time at the moment and even bit his teacher yesterday. Later he had his first swimming lesson and you would not have known he was any different to the other kids there.
    Regarding your comments about how you are able to manage other special needs kids but not your own I know exactly where you coming from. I have come to the conclusision that it is because we are too emotionally involved. Everytime Jack does something I feel like I have done it myself and as his mum I feel that I should be able to stop it. My husband points out that Jack is his own person and we can only be there to support and help. Still not easy as a mum.
    Look after yourself and talk about it to your colleagues, they may be able to help. Most of all you are not inadequate and are doing all you can to give your child the best support. I am sure that as you go down the road of assessments etc you will have highs and lows but you are never alone!
    Take care
    Connor
    Ps. I think your daughter sounds very bright, I loved the way she hides the puppets that ask her to do things she doesnt like.
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