Pathological Demand Avoidance Syndrome, Anxiety, Preschool, statementing, need advice please!

[smugtandemfeeder]

I havent posted for a while, we have been dealing with all sorts of stuff and struggling to cope and to work out what is happening with our son. He is 3 years old and we have a private initial diagnosis of Childhood Anxiety. Im certain he has Pathological Demand Avoidance Syndrome as he meets all the definitions of it and when I read the long threads on here everyones life sounds exactly like mine.

We have started settling in sessions at the local preschool. DS has terrible anxiety and hates being left. The preschool said he should start settling in sessions now, ready for september and agreed that I could stay with him until he was settled. However on my second visit with him they tried to get me to leave him for half an hour. I felt strongly that this would not help me son but they said they couldnt help unless they could see what he did when I left him and a very unhelpful non SEN teacher kept telling me that they like to push the boundaries and we just have to get through it and ignore the tears. We did three months at a childminder where the tears and tantrums got worse and worse to the point where DS was kicking and screaming and had to be dragged over the doorstep. He would cry uncontrollably for over an hour and our lives were utter hell when he got home.

Please reassure me as to whether I am right to be strict with the preschool and follow my insticts. I agree with them that they wont see the problem unless I leave him but my aim is for him to like preschool not to make my son miserable just to prove a point. However I wont get much help unless I do leave him sobbing.

Should I sack preschool off completely and try to get a statement before he starts there? I think have read here that it is easier before you get lots of teacher opinions on the matter.

We are due for the nhs nursery assessment but they have said we will have to wait 9 months and we will need to apply for primary school in november.

So confused.

Never had a statement so am not best one to answer your questions but given current political/funding conniptions I would apply right now. In terms of pre-school - given the history with cm, I would also be uncomfortable with them trying to hurry the settling in process, as it doesnt sound like they have anything up their sleeve if he does get v. distressed. If your gut feeling is that the pre-school isn't understanding of your ds' needs then yes, I would think about looking for another setting.

afraid it's a hideous quirk of SN system that it all seems to run so separately from the school admissions, and noone has any sense of urgency. when you look round primary schools, ask searching questions about how they support kids with similar issues to your DS and SN provision.

My initial meeting with the preschool was amazing and I felt they really understood. Then when I went back for my second settling in session the same people suddenly tried to pressure me to leave him, despite me saying no. I felt utterly miserable which then prompted them to ask me if I was ok and to suggest that if I looked anxious then my DS would pick up on it and become anxious. FFS I dont need advice on how to leave my son. They treated me like he was a NT child and that I was the one with a problem being over sensitive. Not what I expected. We then had a long conversation where I tried to make them understand the situation again but I just wasnt expecting it.

The SEN teacher seems very good and understanding but she is not assertive so the bossy normal teachers seemed to be telling her what I should do.

totally agree with all the strategies homeboys used in settling her son in. my 6.5 year old has had to be settled in like this for playschool (took 4 months till i left him), reception (took about 3/4 months), hes currently been out of school since January. Also has severe anxiety/seperation anxiety and possible PDA/ASD. Ed Pysche says PDA but I wont be happy with that label until a paed has confirmed it or not. Dont let the playstaff make you feel undermined, you know your son best, not them. You just have to feel confident in saying that you will not be leaving your son until he is ready and then do everything homeboys says above x

Good, i'm glad I have back up from the SN MNers to ignore the pre-school. I appreciate having some experienced people who have been through similar things to tell me my instincts are right. Its just so hard when you dont actually know for certain how he will react. There is always a nagging doubt that this time things might be different and he might just be happy being left. But I know he wont be, goodness only knows i've tried that enough times. I have only been able to leave him with a baby sitter a few times in his life. I have managed to get him reasonably happy with a childminder but this has taken two years and he still plays up with the transitions and when he gets home he is very emotional and screams a lot.

The childhood anxiety is the initial diagnosis the psychiatrist made when DS was about 2 1/2. He said he wouldnt diagnose anything else until he was three as the anxiety could possibly be improved or corrected before he was three but after that he said he would always be anxious.

Psych told us to do a few things.

1. Get rid of all scary stories at bed time and tell him nice happy ones.
2. Reassuring him at bed time that he was safe.
3. Skin to skin contact with DH and me, eg at bed time taking our tshirts off.
4. Naughty step for ten seconds every time he did anything wrong.
5. Never ever ever shout with DS around.

We have done all this but DS is not responding much of the time to the naughty step it just makes him freak out and have a panic attack. We have been doing it now for 5 months consistently. In fact he often hits his sister just so he can go on the naughty step. This fits in with everything I have read about PDA.

He has been sleeping better since we started all the things the psych suggested. Going to bed much more easily, even allowing us to leave him in the room on his own and getting himself to sleep which is a MIRACLE. He still wakes up 3 times a night, often upset but doesnt have the night terrors any more and doesnt scream as much as he used to on waking. Just grumpy.

DS does loads of controlling stuff. He has done for years. Always taking the cat into the garden and refusing to let the cat back in the house. Tipping watering cans of water over him. Often find the poor cat shut in DSs play house or in a cupboard.

Saying you must do something or saying no is one of the worst things you can do. He spends most of the day screaming and whining, hitting his sister, hitting me, trying to kick the dog or the cat. Slamming doors (naughty step has reduced this a bit). If he gets hungry you have had it, he screams and starts throwing things. Ive tried some very basic jokey stuff with him about "I bet you cant eat all your weetabix" and he has run to the table to prove me wrong whereas if you try to coax him into it he refuses and scream.

Interestingly with my MIL he puts on a massive act and spends the whole time ignoring me, being an angel, but he also tells her exactly what to do and she does everything he asks. Cue screaming and tantrums for weeks when we get home.

I spend a lot of time telling my DS "you are safe, you are safe" and it definitely helps.

Hunger is a massive trigger but if you try to get him to join in with family mealtimes or encourage him to eat it he refuses. I have recently been leaving a plate of food out at all times so he can choose when to eat and this is really working well.

Not shouting is the hardest one because we are so tired and it is so hard to stay calm when he has a panic attack and starts hitting people. I have been locking him in the garden on his own for 5 minutes to calm himself down. Its probably a terrible thing to do but he does calm down quicker that way and sometimes I just dont know what to do when he starts kicking and screaming and hitting the 9 month old baby and the puppy and the cat! Is it totally the wrong thing to do? Sometimes its the only way I can survive.

We need help but everyone seems to be talking to us like we just have a naughty little boy and we are too soft on him. What can people really do to help anyway. PDA seems like such a complicated thing.

i bought a lavae lamp which switches colours and has plastic fish in it, when my son goes mental i put him in the bedroom and tell him (or rather shout) to stay put, turn the lamp on and shut the curtains. He hides under the quilt and shouts to himself till hes burnt out then comes out again. Amazingly he has now started to say sorry after an outburst, had to teach him to say it mind you, didnt come naturally and Ive started asking him what hes apologising for, he says he doesnt know mostly so i tell him myself

LeninGrad, you will find the move from Reception to Year 1 extremely hard, thats basically what caused my son to stop attending school. I find out mid June if he has a statement then hopefully get him into a special school where they can support him better

I'd love to remove myself but we have a baby, a puppy (why oh why....) and a cat who all get hit if I leave them.

I did have some success for a few weeks telling him to go and "make himself alright" in the kitchen on his own. He would go in and scream and then eventually come out ok again. A similar thing happens with the garden thing. We have patio doors so we can see each other, bless him. I tried the naughty step putting him the other side of the patio doors today and talked to him through the glass (this sounds like utter madness!!!) but it was more effective than trying to make him sit on the stairs. Im sure like everything the effect will wear off again.

I set up a relaxing sensory room in his bedroom with lava lamp, led star display, lavender diffuser, glitter ball, all sorts of things. It just stopped him sleeping because he wanted to play with everything. Might set it up again and try again with getting him to self calm. Its such hard work. And not going to get any easier for some time by the sounds of it. Thats such an awful feeling.

Pre school are going to do a home visit with the area SENco in a few weeks time so i'll see how that goes. I need to post off letter requesting statement as Early Years team are trying to fob me off and ask me to wait until pre school request statement. Begger off.

Sounds like you are having a pretty hard time right now. But, although it seems impossible sometimes, you can find things that will help you and your ds cope better. Don't give up hope yet!
Maybe you could try setting up the relaxation space somewhere other than his bedroom. Have you got a play tent or similar or just make a den where he can go and be in a 'safe place' that feels comforting for him?
Foot massage has been something that my ds surprisingly enjoys. I started by asking dd if she wanted one and he soon came and demanded a turn. You could try massaging the baby's feet first while your ds is around and see if he asks for it. I started with just plain olive oil at first as he's quite sensitive to smells and over time added a tiny bit of chamomile and then lavender too- he tolerates it all. Could help a lot with relaxation, sleeping and bonding too.
Another idea that I am going to try is getting ds a trampoline that loads of people say help with behaviour.
The best tactics we have found have been to reduce down our expectations and decide on as few rules as possible- these few should be non-negotiable. But, for everything else, be as flexible and open to negotiation as you can. The Explosive Child is a really good book for this.
We've never had any success with naughty step. Even when our ds is hitting out and very angry, he is usually calmed most quickly by us very calmly explaining that we can't allow him to hurt people (while physically restraining him), and trying to guess what is bothering him, eg. I can see you're really angry right now. I know you feel very very cross but I can't allow you to hurt anyone. If you use words, I can understand what the problem is and then we can sort it out. Are you cross because dd has moved that toy? You wanted it to stay where it was? Yes? OK, well dd didn't know that was the problem. Now you can tell her and we can talk it over and find a solution'. The minute he is calm enough we offer him a hug, he nearly always accepts and we can start to talk properly.
Keeping calm yourself is definitely the biggest challenge but practice makes perfect! I have totally lost it with my ds this morning and thrown him on his bed and given him a time-out- I'm not proud of myself at all. But, I know that given the provocation (and parents of the average child have no idea just how provoking these kind of children can be!) I think I do pretty well on the whole. The important thing is to forgive yourself for being human and move on.
With the separation anxiety have you tried going to 'mums & tots' type groups where you stay with him. It might help to go to lots of those and get him used to that kind of group environment, then as he gets a bit more confident you might be able to nip and change the baby's nappy and leave him briefly. Then build up from there.
HTH.