DS1 with PTSD and undergoing EMDR Therapy (apologies for the long story, )

[DayDreamingDaisy]

DS1 (11) was diagnosed with PTSD (and some other long named stuff as well) in June. We knew his transition to high school was never going to be easy but never expected what has happened over the past 5 months.
Anyhow, he loves his high school, has a gang of mates that he travels on the bus with mornings and afternoons, they are all older than him but he seems to get along well with them. He hasn't formed any real friendships in school and we know this is an ongoing issue as he can be extremely demanding (his way or the highway and emotionally immature, bless him).
In October DS1 started EMDR therapy and I have to sit in with him in his sessions. Up until yesterday the work has been to prepare him for the therapy and to make him feel safe. Yesterday the real work started. The guilt and sadness he carries around with him is unbearable and heart breaking and I am so proud of how he coped yesterday and am very grateful to the CAMHS team that he is being given a chance to move on from this and hopefully to lead a happy life. The plus side to all this is that DS1 shows very secure attachment to me, looking to me for reassurance and cuddling up to me when things get tough in the therapy sessions.
School have put DS1 on Action + but the communication from SEN to the teachers seems a bit patchy and now the therapy is underway he is struggling in lessons and at times there is little or no understanding because his difficulties are not visible and because he is very bright and in top or second sets for most subjects so is expected to be "normal". I have rang them today to see what they can do to reiterate his difficulties and as I was on the phone to them he appeared in the SEN Co-Ordinators office during lesson time so he is obviously struggling again today. Now I am sat in my office panicking that he is all alone at school and needs me......
Life at home is not easy, DS2 (9) is also to undergo the same therapy once DS1 is through, but his issues are more grief and anger related and DH is signed off work until the new year as it has all got too much.
I feel as though I could stamp and yell and scream - everyone tells us we are doing a great job but I feel like a failure - no-one seems to know how to help us and my confidence as a parent is at an all time low as we face so much challenging behaviour from both boys.
Next week we celebrate our 7th anniversary as a family and both boys want to party! So that's good news too!
Sorry for the long moan but wanted to see if anyone has any advice or tips from their own experiences which may help us on our journey.

Hi Daisy and to you

I could have written some of that post!! Both DD1 and DD2 have PTSD and also both have several other diagnosis between them (at various times they have had labels of global developmental delay, possible FAE, attachment disorder, sensory integration disorder etc etc). It's hard to know what's what when so many behaviors overlap, but PTSD is something they definitely both have

Both have got a lot out of EMDR, it's been a real step towards healing for both of them especially DD1 (not so much DD2 but I think her attachment issues and maybe FAE compound everything and make it really hard to make progress)

School can be really hard. DD1 was always in an EBD school and DD2 followed her there once she was statemented. The school is fantastic BUT before DD2 was there she went to a local primary and they were absolutely terrible. Communication was poor, they had zero understanding of trauma or PTSD and whats more no willingness to learn about it either. I really sympathise on the school front. PTSD is an invisible disability and whats more a poorly understood one especially when it occurs in children.

Sadly though I would say that after starting therapy both girls got worse before anything improved. They had spent so long trying to bury it all - putting on a compliant face then sudenly it would exlode out -and it was very hard when it got brought back to the front of their minds. They had to do it to process it all, but it did cause a downward spiral in their behavior both at home and school. However it's fantastic to hear you have such a good attachment to each other

With school, what form is communication taking at the moment? Do you have a planner or similar in which to write notes back and forth with school? And how much are the school taking on board and do they understand what PTSD is? All made much harder by having different teachers for different subjects because you can't talk to them all. Is there any possiblity of a TA or 1:1 for him? I hope he is okay after coming home today

With friends, it is very hard. DD2's best friendships are really with much younger children (around 7-9 now, and she's 15). I try and foster those so she has a genuine experience of friendship but they hate her being bossy with them. Generally she's better now and she has some close friends (all at her special school with her)

But whatever happens, YOU ARE NOT A FAILURE! You are a fantastic mum and you need to be kind to yourself. This is the hardest kind of parenting and adoptive parents are the worst at critisising themselves (I'm guilty too!) - but keep as postive as possible. You are the best mum in the world for your DS full stop, period. :) If you feel like stamping and screaming I highly recommend trying to find any spare moment where you can get out of sight and actually do it! Get it out of the system. My top advise is to look after yourself as much as possible.

Reading back, I know I don't really have a lot of tips because I struggle with it a lot myself, but I do understand how it is
xx

Hi Lilka and thanks for the , and sending them back to you!

Where to start.... DS1 behaviour is at extremes at the moment - euphoric highs and crashing lows, to be expected I guess as like with your DD's the stuff he has hidden for so long he is now expected to confront and deal with. DS2 is incredibly jealous that DS1 is getting help and he has to wait, so he ups the ante on the behaviour front as well!
School have not set any communication up which I find frustrating, I have to phone if I need to pass anything on and then wait for the SEN Co-Ordinator to call back. As she only works PT she is unaware of most of what goes on. The Pastoral Manager this week asked DS1 to lie if he was struggling in class to ask to go to the loo if he was feeling distressed to give him some breathing space. But why should he lie? There is nothing to be ashamed of... anyhow the SEN Co-Ordinator got an ear bashing from me this morning and was sympathetic to my point of view and agreed to email all the teachers again. CAMHS won't look at a statement until DS1 is through the therapy and they can assess what his ongoing needs will be so school (who initially offered classroom support until they realised how intelligent he is) will not give him any additional classroom support at all. He was happy enough when he got home from school but said he's had a wobble this morning but was sent from SEN to Pastoral Care worker (who I have never met).
I am so sorry for your situation Lilka, but feel reassured someone else is on a similar journey to us. I don't know about you but DS1 crisis all happened in an 8 day window in June and although not totally unexpected, the severity of it shocked us to the core and we are still trying to come to terms with it all in some ways. I think it is human nature to look from within first and blame oneself for not foreseeing what would happen. I do try to stay positive but this morning just felt so down about it all, am more upbeat tonight though after a challenging hour at bedtime the boys are settled and in bed.
Time for a cup of tea and a chill in front of the TV for a while!
xx

what an emotional time for all of you. Embarking on therapy is a very emotional time for everybody and as you know can be both physically and emotionally draining. You sound so connected to your DS and this must be very reassuring and containing for him as he goes through the experinces of learning about all of the feelings that he has needed to bury for so long.

It must be very frustrating and confusing that after finding the therapy that your son needs the school appear to be less accomadating and undersatnding of his emotional well being during his therapy and when he returns to school following his sessions.

It may be of benefit to talk to his therapist about your concerns as you are only too aware that his therapy doesn't stop when the sessions finish? I think it's really important that the Therapist is aware of how your son is expereincing the sessions both during and post sessions.

Could you ask for a review meeting with the Therapist without your son being present. Does the therapist have any suggestions that could be helpful e.g could they attend a meeting with the school? Do they have any information that could be offered to the school e.g what the therapy is for? Can the therapist offer any suggestions to the school about how they can support him emotionally on his return to school or before his sessions? Does the Therapist have any suggestions of how you can support you son following sessions? Are the times of the sessions appropriate for him, could he have a later session so he goes home rather than returning to school after such an emotional expereince?

I hope this helps and i wish you all the very best; your son is a very lucky boy to have such an understanding and supportive mum xx

Daisy, I have no useful advice to give, but just wanted to offer my support. Our children do have so much shit to cope with,don't they? But you sound like such a great mum.

Things have moved on a lot since November when I originally posted this, with meetings at both the boys' schools, DS1 's school is doing a statutory assessment and he already has funding for support in the hardest lessons until July, the therapist has been into school to help and advise the support staff (and has adopted an open line of communication with school so they can call him at any time for advice and help) and we have another school meeting with support from Parent Partnership planned for January. More efficient communication is also happening.
DS2 's school have put together a support plan, they have been fantastic while I have been concentrating on DS1 but the time came when we needed something more official sorting out as in 18 months he will be moving to high school and we need to make sure we get it more right for him than we seem to have done for DS1.
Christmas and New Year have been hard, as ever, culminating in DS1 having a huge meltdown (he has been really poorly and once he started feeling better it all got too much), and then the knock on effect for DS2 meant he gets completely overwrought.
Therapy starts again this week after a 2 week break and some very hard times happening before the break so we will see what lies ahead. Our CAMHS have been fantastic and I cannot fault them - we have our own appointments as well as the therapy for DS1 and appointments for DS2 and are always on the end of the phone if needed - I know a lot of areas do not have excellent CAMHS facilities, but we are extremely lucky.
Hubby and I have started working on some mindfulness meditiations (if you met us you would know this was really the very last resort , but......), and it is having a positive effect and appears to be helping us come to terms with everything a little better.
Hester - you are right, our kids have so much rubbish to deal with and it is heartbreaking.
Our motto for 2012 is - we will get there, probably much greyer and definitely much wiser!

Daisy, thanks for updating us.the holidays are so hard for many of or kids, arent they, with the lack of the usual routines? Glad you have survived without murdering anyone .things at school sound much more positive too