bigredbus
New Member
Married Adopter
Posts: 30
|
Post by bigredbus on Mar 1, 2014 9:05:47 GMT
Many changes at school recently.
could't have asked for better support in managing them... T.A Prepared her, social stories, amazing reassuring t.a. who supports her through everything
but she as ever can't cope.
behaviour off the scale.
genuinely, i don't know what more we could have done at school / home to support her through it all...
i just feel that nothing is ever enough.
am exhausted. My life revolves around keeping her regulated and I just feel that nothing I do is enough.
she has fulltime 1:1 at School. Everything at home is set up around her needs.
I need some help, but I don't know what more anyone can do, as fundamentally this is just the way she is.
|
|
Deleted
Deleted Member
Posts: 0
|
Post by Deleted on Mar 1, 2014 9:16:22 GMT
Not sure which DD you are talking about? If it's the 13 year old, have you got any CAMHS or PAS involved?
I know a lot of PAS run teenage groups who host all sorts of activities for teens, like a weekly teen youth club for a couple of hours. They also host days out at holiday times, so she, might be able to attend some of these to give you a break.
Also have you asked about respite? If things are really tough then maybe you could have this for one weekend a month where you can spend some time to recuperate or just to be with your YDD without EDD's needs getting in the way.
|
|
bigredbus
New Member
Married Adopter
Posts: 30
|
Post by bigredbus on Mar 1, 2014 9:45:53 GMT
Sorry talking about little one : 8.
so far we're off radar with nhs..
had some good therapy paid by placing agency a couple of years ago and we pay for OT (sensory) which helps.
have made dr's appt for next week. Going to ask for referal to dev.pead/ camhs. Am worried though that they will just see us as rubbish parents...
so far everything been explained in terms of attachment / developmental trauma. But I think she has something along lines of adhd/asd as well.
her anxiety is off the scale (though she contains it and lets all out at home)
she presents as 'fine' but is a timebomb that explodes at home.
school get her and are supportive.
feel awful saying it, but have done a million different theraplay / therapeutic parenting interventions. I think she needs something more like medication to calm her down. Is that terrible?
|
|
|
Post by daffin on Mar 1, 2014 10:34:15 GMT
Not at all terrible to want things to get better.
I asked GP for an ADHD assessment for Monkey Boy recently. I genuinely think he might have something like that (it's there in BF) but I was also thinking "wouldn't it be EASY if it was something that a little pill would make better". I don't want to stuff my kids full of drugs but if medication helps peel away one of the behavioural issues then we could work on some of the others, or at least see what is still there. And boy oh boy a bit of calm would be nice! We have been offered at CAMHS assessment, but I think the waiting list is 6 months.....
You sound exhausted, and at the end of your tether. My experience of this is that things go in cycles. Some explicable, some not. We've had a really good week, so I'm feeling pretty Zen, but the week before (and the 10 before that) were carp. Do you experience cycles? Or peaks and troughs? Can you do things to give yourself some space and time while you wait for external support or for this intense phase to pass? Can DH mind the fort while you have an evening off (every week)? Could you line up some respite?
Let us know how things go. Good luck.
|
|
Deleted
Deleted Member
Posts: 0
|
Post by Deleted on Mar 1, 2014 10:43:00 GMT
You are completely within your rights to insist on or demand an ADHD assessment.
Daffin (or bigredbus) if you want a CAMHS referral you will have to lay it on thick at your GP's. If you say you are not coping, that your childs behaviour is effecting the whole family especially any other siblings, then they will give you an urgent referral and you should be seen within about 2 weeks instead of the six month wait, but this will only happen if you make a big fuss and say you are at your wits end, so acting skills may need to come into play, to speed things up. big red bus, sounds like you need help and sooner rather than later so I'd get down to the GP's surgery and lay it on thick.
It is so common for our kids to seem relatively "normal" at school and then meltdown when they come home and that's what the prof's and school don't see, so you will have to spell it out to them. Unfortunately CAMHS will suggest parenting courses as this is nearly always their default - (blame the parents, first) and then realise 6 months later that actually the parents were right in the first place.
It is a fight, but you will get there. Good luck.
|
|
|
Post by sooz on Mar 1, 2014 10:44:28 GMT
Sending hugs as you sound all done in right now.
Acceptance that they are the way they are is a really good thing, as is accepting you absolutely cannot regulate everything and to be honest shouldn't try, it is totally exhausting.
I would try to get involved in some special needs groups, the level of acceptance and understanding from other parents is priceless, as is the advice or recommendations. It's a good place to start when your head is totally screwed up and your capacity to 'do battle' is low.
Xxxx
|
|
bigredbus
New Member
Married Adopter
Posts: 30
|
Post by bigredbus on Mar 1, 2014 15:55:32 GMT
Thank you all so much. I know there is no magic pill or magic wand to wave away all her problems, but I feel saturated. Have tried so many things... Am very open to new ideas and they have made some differences. But we keep going around and around this cycle of ups and downs. Everytime I think we may have turned a corner, it all kicks off again. There is only do much you can do to control her environment. Unless we live in a bubble, things do change and I don't think this level of anxiety is good for anyone.
It takes as much energy to keep her calm and to try and prevent her getting in a state, as it does reacting to outbursts. Been at this for 7 years now and I have changed my expectations and parenting style so much. Everything resolves around her and I try so hard to accommodate all her sensory, attachment, learning needs etc.
Am frightened of being seen as useless and wanting to medicalise her, but I really can't see how anything about our lives can be viewed as being 'normal'.
I'm touched by all your support. Thank you.
|
|
|
Post by moo on Mar 1, 2014 16:16:33 GMT
Hugs to you both bigredbus & daffin {{{}}}
Great advice from Jmk....
Hang in guys post away we are all great listeners here
Xx. moo. Xx
|
|
|
Post by damson on Mar 1, 2014 17:38:34 GMT
Do you get Disability living allowance? If the problems were seen as disability, not 'just behavioural', then perhaps there might be a bit more help available.
It does sound like the whole world has been arranged around her, and there is no space to breathe. Perhaps you need reinforcements - after 7 years, no-one can say that you are not committed to her! Care by others could be just the job for helping her towards a slow transition to secondary school. And you, DH and EDD could breathe out a little?
|
|
|
Post by sockthing on Mar 1, 2014 18:35:00 GMT
Sorry if duplicating peoples replies, am readin and writing in haste
I agree that you are sensible to be wondering about an autistic spectrum disorder - as high anxiety about change, and sensory issues are both part of that and in fact we got sent to a paediatrician on the basis if these, who then diagnosed high functioning autism (though that has been changed to social communication problems now)
hyperactivity can be part of asd too. And if you have tried tackling the attachment stuff- Theraplay etc then it's worth ruling out other neurological conditions etc.
Sounds really draining. Kippers level of anxiety about change really is stifling and tiring at times though we are lucky it has improved a lot.
Hioe you you can get the help you need. If it turns out to be ASD then you can go on a parenting course geared specifically for that - Donatella is the one to give advice about that. I'm guessing it would be well geared to strategies for coping with the stifling levels of rigidity and predictability needed by the child.
Good luck, keep us posted.
|
|
bigredbus
New Member
Married Adopter
Posts: 30
|
Post by bigredbus on Mar 6, 2014 11:51:50 GMT
Thank you for all your support.
Saw GP today(without DD) They were so nice - listened and can see that things are hard. Will make a CAMHS referral and asked me to go back another time to talk about how I'm coping...
I am terrified that camhs will blame it on my parenting, but also relieved that someone is going to look at the behaviours from a medical perspective.
hopefully not too long to wait and maybe some answers / strategies will come from it.
|
|
Deleted
Deleted Member
Posts: 0
|
Post by Deleted on Mar 6, 2014 12:30:36 GMT
Hope it was an urgent referral bigredbus, otherwise it could take up to 3 months to be seen and then another 2 months after the assessment meeting, so hope GP is doing an urgent referral for you.
|
|
bigredbus
New Member
Married Adopter
Posts: 30
|
Post by bigredbus on Mar 6, 2014 16:32:34 GMT
Thank you so much. Will start writing a summary - brilliant idea. Have so much paperwork from various sources and couldn't expect anyone to have time to read it all.
|
|
|
Post by donatella on Mar 6, 2014 16:55:28 GMT
It's become the norm for professionals to assume that any issues our children present with will be caused by trauma and attachment. I'm not saying that's not a part of it - it certainly is with one of mine - but it doesn't have to preclude anything more clinical. I'm firmly of the opinion that if you dig deep enough ( and generally no-one has ever cared enough to) there will often be underlying reasons for birth parents dysfunctionality. Yes they drink, do drugs, endure abusive relationships? But why? Why are they self medicating?
I have three children and my youngest two were both dx asd last year. They're not birth sibs. One also has ADHD which was dx at 6. Medication is a godsend.
When mine were were assessed we met the usual adoption = attachment argument from camhs. Luckily both my kids were involved with other experienced and knowledgable profs and we got the dxs. Asd is different in every child, my daughter is very different to my son.
Have you heard of the Coventry grid? It's here on the resources section. Also google tony attwood, Lorna wing, temple grandin.
Additionally the NAS has a helpline and lots of resources on their website.
|
|