Getting truly desperate with ds- I think I am on the verge of a nervous breakdown.

[popgoestheweezel]

I am just worn to a complete frazzle with ds and his coming out of school meltdowns as well as all the other ones. I can't cope anymore and I'm just crying all the time now. What can I do? I am desperate for some help but I don't know where to turn. Dh is doing his best but is under the same pressures as me. School are asking me to help them with strategies and understanding PDA. My mum & dad are supportive but don't really know what to do. Although my sister lives just around the corner she is too busy in her own life and offers me no support of any kind whatsoever, she won't even really talk to me about him, she just changes the subject.
I just can't deal with it anymore. The other parents must just think it is madness and much as you develop a very thick skin you know that this is effecting everyone's opinion of ds- no wonder he doesn't get invited to play. Ds has one friend and his mum is a complete star and so lovely, they play together at least twice a week. She has taken him home with her tonight cos I don't think I could have got him off school premises by myself, even though the friend came to us last night and it's already planned that ds go there tomorrow, ds can't wait til tomorrow, everything has to be NOW!
He has always had these meltdowns, right from the beginning of reception. It always centres around having someone over or going to someone's house. We have tried after school activities but he just won't engage and it just adds to the stress. He is nearly seven now and it's only getting worse. I don't know what to do.

I think we need to figure out how to reduce the stress levels at school cos I think this behaviour is just a release of the pent up anxiety throughout the day.
I know that medication for me wouldn't actually change things- the issue ds pervasive developmental disorder, and my feelings are just a natural response to the daily strain of living with it. They might help on a shirt term basis though.
Medication for ds would be an absolute last resort and at the moment I am sure there's loads we can do at school to help him. I am so glad they are finally on board, it's just now a process of trialling diff interventions to see what works.
We are waiting for our first triage appt with Camhs, but that will prob be another 8 weeks yet, and that will just be gate keeping to another wait for another a professional that might be able to help.

I know what you mean about medication, that it might be a very simple solution to a big problem and life could be very, very different for you. I just have an inbuilt (PDA?) resistance to the idea of medication for any problem but that's rather illogical I know. I guess children wouldn't necessarily have to be on it permanently, perhaps just when they're finding things particularly difficult.

Is it worth trying to get respite care through the council so that you can at least have a bit of a break? I think you have to ask them to do a core assessment.

My son (still waiting for cahms to give him a title - though dh and myself convinced PDA - full time statement already n place) calmed down quite a lot (still not perfect by a Long shot) when I started giving him behaviour balance tablets. I know it's worked for some and not for others - but for us it's reduced the meltdowns loads ...

He has been on behaviour balance for two years now. It had a massive impact on him, but all the same we're really struggling.
I keep thinking there might be something else we could try which would be an easier option like supplements, we are so exhausted by it all that we don't have energy left over for anything. I am considering trying going gluten and/or dairy free, homeopathy, cranial osteopathy and anything else I can think of. He had some reiki last week which did seen to have a positive impact on him, he has been markedly less stressed in the mornings before school since he had it.

We tried the tinsleyhouseclinic house regime and had no probs with the diet and supplements and he managed to do the first few exercises without too much of a battle- they are pretty quick anyway. But when it came to the second stage with the vision therapy he was not having any of it. Screaming, shouting and general throwing self about mayhem accompanied the daily attempt at doing it. We persevered for weeks and weeks but it was sheer torture and in the end we knew that we couldn't continue for the sake of our own mental health and our relationship with ds. With the first stage we'd noticed an improvement but doing the second stage undid all that progress.
We have also taken him to a hypnotherapist which was ok and we picked up some useful tips for bolstering his self esteem with hypnotherapy stories etc but not much more really.

Hi. I don't know where to start but I have been exactly where you are right now. My son has a diagnosis of ADHD and PDA. There was a time when I told the 'professionals' that I would drive my car into a wall one day, because leaving the school every morning feeling like I had done a full day in the boxing ring was too much to bear. Some days I didn't want to go back for him, I couldn't face the hours of grief ahead of me. I did have a breakdown and literally for an entire week the only time i did not sob was when I fell into an exhausted sleep.

People who do not have a child with PDA can't understand what it is to live this way. When normal parenting just doesn't work. We are now 15 months down the line since diagnosis and life is better, life will never be easy because unlike what some people seem to think, the condition doesn't get better as they get older, you just learn how to deal with the drama and the fallout. Emotionally I am in a better place than i have been for years. There is so much I could say but it would take up pages and pages on here!! I am happy to support you, one if the worst things is feeling that no-one really gets what you are going through. Hugs. Kyla xx

Kyla- it is so 'good' to hear that there are other people who know what it's like. After I drop ds off in the morning I feel like a limp rag and there's just no energy left to go into work but its a real relief to deal with rational people for a while until I see the clock counting down to pick up time and my heart sinks knowing what's awaiting me.
I find it really difficult to explain to people quite how he behaves as he's so variable from one situation to another no one gets the full picture. Sometimes I can't even examine it to myself what he does to be so high maintenance but I know that I can look after 4 or 5 other children and added together they don't even come close to being as demanding as ds alone.
Dh took ds away for the night when dd had a sleepover with 5 friends and it was a walk in the park compared to dealing with ds.
Can you tell me if school used any particular strategies with your ds? School are being very supportive and they're asking for my guidance, it'd be helpful to know if there are any ways to help with the pre/post school issues. We have asked them to give him extra support at start and end of day which they are organising but is there anything else?
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I also have a very demanding child who we believe has PDA. She has existing diagnosis of mild/moderate ASD, mild dyslexia, sensory processing difficulties, auditory processing difficulties, significant impairment of motor skills, hypermobility/low tone (with tight calf muscles after years of tip toe walking) and ADHD traits. It is in her statement that she is demand avoidant. We are currently under psych for high anxiety but that's pointless as he answer is to get her to join more clubs and give her melatonin to aid sleep! I wish it was so simple!

Camhs here won't diagnose PDA but say they will support children who have a diagnosis (not many then). Currently debating whether it's worth pushing for a referral to the Elizabeth Newson Centre.

She is 14 years old and avoids all demands! Won't walk anywhere, won't wash/brush teeth/hair etc etc etc. Every day goes from one meltdown to the next which are becoming more aggressive. She isn't physically aggressive ATM although she's becoming more physical and she hurts her little brother unintentionally but her verbal aggression is terrible.

My ds2 6 is terrified of her and I can't take them anywhere on my own. He has selective mutism, hypermobility and a speech disorder and gets upset very easily. He hates shouting and it causes him great upset (currently under assessment for ASD).

My dd's school are rubbish (special school named by Lea) so we are looking at trying to move to independent. Social services are delaying assessing so we are currently fighting that as well. DD also targets ds2 and basically bullies him. She criticises everything he does and talks to us all like sh1t!

Its so tiring and hard to explain to people. We desperately need respite to give D's 1 12 and ds2 a break, if nothing else. We don't really go anywhere together as it always ends up extremely stressful and ds's can't have friends around as dd can't cope with it!

I feel so sorry for her that she finds life so stressful but I'm knackered tbh and just not fair on my other children. We're struggling to meet all their needs.

I hope you don't mind me getting it off my chest as its rare you find people who understand x

Hi guys. He is 10 now. I will tell you how it was first, in nursery and reception I was told he wouldn't do as told, join in and shouted over everyone demanding attention NOW! Year one and two I was called every day to be told by his teacher how naughty and disruptive he was. By year 3 the school had decided there was an underlying problem. My worst years were aged 5 to 8. It was exhausting to get him into clothes and out of the house I had to carry him kicking and screaming to the car everyday, my older daughter would try and hold onto him until I got the car going. Then I would have anything he could get hold of thrown at my head and kicking the seats. At school he would run front to back of car so I couldn't get him, a teacher would have to come and stand there. Then I would carry him, being hit kicked and bitten. If he got away from me he would run. I would carry him to class and he would try to follow me, most days I had to wait for the one teacher allowed to restrain him was free to take him. When I collect ed him, he could grab round my legs and sit on my feet so I couldn't walk. More aggression towards me and siblings. Non stop talking shouting demanding. When I put him to Bed he would get back up over and over, or shout MUM and kick the walls the more I ignored it the worse it got usually until 1am when I would collapse into bed and then start all over the next day! So that was how it was, i will type another message later about what the school and I have done to manage his behaviour. Xxx

Again 'Glad' to hear 5-8 was the worst for you, ds is almost 7 so we are in the middle of this stage. It reassures me that things can get better not worse.
Dh and I have often said let's keep a diary of PDA type behaviours but, honestly, we would be writing all the time as there are just so many! That's even though we know its PDA and use the right strategies most of the time

Sazale I totally understand, my littlest boy flinches when T moves cos he expects to get hit. My eldest daughter lives with my parents during the week! Do you have young carers in your area? My younger daughter and son have joined it. It's somewhere they can be away for a while with adults and other children who understand how hard it is to have a sibling with these difficulties.

We went through caf, then camhs and got no where. It was the referral to community paediatrics that finally gave us the diagnosis.

In year 2 T spent most of his time trying to escape from school or laying in the corridors kicking the walls.

He had some fantastic teachers in year 3 and 4. They basically gave him different rules, he wasn't forced to do anything and demands were kept to the absolute minimum.

They struck a deal with him, he was given a sofa in a safe place outside the classroom to go to when he was anxious and his end of the deal was to agree to stop trying to escape from school. Unfortunately it meant he didn't do much lesson work, but he would read factual books which was infinitely better than the stress before. he would still have episodes but not as frequently.

They allowed him to bring a toy which had previously been denied. He carries bird everywhere, nothing happens unless it's ok with birdie and birdie is involved with every aspect of his day.

They allowed him to wear a hoody because he feels more secure with a hood up. Recently they have got him a specially ordered hoody with the school logo on it.

When he was 8 he was diagnosed with ADHD he is on a slow release Ritalin which does calm his non stop moving and talking during the day.

In Nov 2011 when he was 9 they diagnosed PDA. Within a few weeks they had sent someone to train all the school staff including dinner ladies. They were given a crash course in what PDA is and how to handle it. The most important message was 'CAN'T HELP WON'T'
From September 2012 he has had one to one support. His LSA is incredible, she gets him in a way not even I do! He is doing so well, he participates in almost everything now, she even gets him to eat at lunchtime which he had not done for a couple of years. Having that bond with an adult is so incredibly important to him.

Last week demonstrated how important it is,for him to have that constant support. His LSA had to leave him for a while. The class teacher decided to move all the children into different seating positions. Hmmmm! One child didn't like his new place and the teacher allowed him to move, so T wanted to but was told no. To his credit he kept it together until another boy began to taunt him about being upset. Then he threw a chair at the boy and kicked him. The teachers present could not calm him, they called his LSA back who calmed him in minutes. I will tell you about home in the next installment! Lol xx

Kyla, it sounds like it's been very difficult for you but amazing that he is doing so well now he has the right handling.
The whole school training sounds great, do you know who delivered that? In my experience it is the dinner ladies (and some of our TAs) who deal with even NT children in a less than desirable way. They seem to be most likely to shout and be over the top for even minor misdemeanours. Ds and his friend got a proper telling off from a TA the other morning for going in through the 'wrong' door , it makes you worry how they react to a real issue . Fortunately ds keeps his frustrations and anger in at school for the most part, but I think that's why we have such meltdowns after school.
I also feel so sorry for my dd, she bears the brunt of most of his frustrations and gets hurt several times a day. She has to always be the mature one who backs down and doesn't make a fuss so as to appease ds, she often tries to make me feel better when I'm struggling with him. It is a big responsibility for a 9 yr old

Yet another terrible day with ds, he is screaming and crying as I type, I have just lost it and screamed at him and I just want to walk away from this.
Dd is so upset and crying too. I don't know what to do.
There are no good times here anymore, we used to have glimpses of a happy ds but I haven't seen that for months now. I am so tired, tired, tired of it all.

I have made an appt to see the GP on Monday to try and hurry the Camhs referral up and I have posted on the meet up thread.
I have been to boots this afternoon to get some Bach flowers remedies. Taking ds led to the breakdown but I just desperately wanted to do something pro active, I have given him and myself a dose of the 'calm down' blend and it does seem to have helped us both though so a silver lining there. I have also ordered more Epsom salts as we'd run out, so, I am trying to still do things to help. We have more reiki booked for a couple of weeks time as well. I don't care if these complementary things are all totally useless and a waste of time and money cos at the moment I am just clinging to the hope that something will make some difference.
His behaviour is much more relentless than usual at the moment, we have had these intense periods many times before but none have lasted this long without a bit of relief.

So sorry I haven't been online pop. It's my birthday, we were going to pizza hut but t came home in such a bad and aggressive mood we decided against it! Are you on your own with the kids? Xxx

Also if you can get a paediatric referral not camhs, they're the mental health service and technically asd is not a mental health issue. That is why so many people get no where with them. Community paediatrics better at organising the referrals needed for a diagnosis. 3 professionals have to agree, for us it was speech and language, psychologist and paediatrician. But paeds doctor organised it all, collated all the info and then let us know the decision.