Help! Daughter still not seen a TS specialist after two years, Secondary school looming and advice needed.

Hi all. It's two years ago this month since I went to our GP regarding my daughter's tics.

We were sent to a paediatrician-lovely man but specialises in diabetes-who referred us to a behaviour clinic (ADHD). This seemed strange but I thought "at least we're in the process of getting some help".

They asked us and the school to complete masses of forms and confirmed TS. She also has OCD and I asked for a referral to CAHMs or a specialist...

Having had no reply, when we saw our paed last Aug I asked for a referral again so my daughter can get some help well before stating senior school next Sept 2015. He referred her to the GOSH Tourettes Clinic but that was 7months ago and still nothing!

My daughter is now ten and only has one more year of primary left. I am getting increasingly anxious as I really want her to have some help with controlling her tics/anxiety/OCD and temper flares before the huge changes she will face at senior school.

I am in the process of writing a letter to chase our paediatrician re the GOSH referral as surely we should have recieved a letter by now, even if the appointment is some time away. I feel like we've dropped of the records completely.

Since having tonsilitis last month and a short school trip away last week, my daughter's rages have been out of control. She frequently hits me and is constantly rude to me. I am trying so hard to get the help she needs and it is getting nowhere. I am at a loss.

I really wanted to get some treatment in place for her and someone knowledgable for her to talk to as she feels so out of control sometimes and we have been trying to muddle along with the info I have found myself but no professional help at all.

In September we will be looking around senior schools so I was hoping to get an appointment myself to speak to them before the summer to see how open they are to providing the support she needs. Would I need some kind of statement of Special Needs to apply for a place out of catchment? I don't think this will be possible. She doesn't have learning difficulties but the primary school give extra help where needed (maths) and allow her to take tests in a separate room.

Our nearest Senior school is very concerned about league tables and not supportive of special needs. I have friends with children there with autism who have found it a struggle. My eldest daughter went there and found it an ordeal without having the added worry of Tourettes. It is a very large and imposing school-I think the crowds and noise level would make my daugther anxious.

She doesn't know I am worred about it and assumes she will go to this school because her sister went there. I will discuss it with her after seeing how the land lies here and at the other local schools but the final decision will be hers. If she wants to go there, I would like her to be placed in a class with some chosen friends from primary but they never usually do this.

Would I need a letter from our peadiatrician OR a specialist as some kind of back up if I want to apply for an out of catchment school that is more supportive? Or to push for the help my daughter needs, wherever she goes?

Sorry for the long post but any advice on what to ask before I contact the paed and what to ask the schools would be a great help.

Thanks in advance.xx

[Lors2505]

Hi

I can totally relate to your post in so many ways. My son was diagnosed aged 5 with TS, ADD and obsessive compulsive behaviours. He also has violent, nuclear" meltdown rages where the only thing you can do is let it run it's course/"ride it out" whilst trying to minimise the damage (to me, himself and the house). He is meant to be seen at CAMHS every 3 months but, despite endless repeated chasing, has not been seen since March last year. He is in Yr5, (he'll be 10 next week), so secondary school is a headache I too am having to face, despite the fact he has a statement of SEN providing 25 hours a week support. Unfortunately the right sort of school that he needs simply doesn't exist - a problem for a lot of children who fall into the same kinds of category, it would seem, they aren't "right" for the special schools but mainstream isn't the right place for them either. Your best bet in terms of being able to pick the school you want for your daughter will be to get a statement of SEN - without that you'll struggle to get a place outside of catchment (particularly if the area where you live is anything like here in North Hampshire and most of the good schools have waiting lists because they're over-subscribed). Don't assume a statement isn't an option because your daughter doesn't have learning difficulties, they are much more wide-reaching than that and are really about additional needs that a child may have, (be they academic, physical, emotional, social, behavioural, visual, hearing needs, etc etc) There is a girl at my son's junior school, for example, who has mild cerebral palsy and needs a frame to walk and easy access to anywhere she has to go within the building or grounds. She has no learning difficulties at all but her mobility "problem" mean she has "additional needs" therefore she has a statement of SEN to ensure there is provision for this (I.e. Support on school trips, her parents being able to choose a school which has easier access for her whether in or outside of catchment, or the school can get funding from the LEA to make any necessary adaptations for her if they need to).

I hope this helps in some small way. My best advice is to make yourself a nuisance and keep calling CAMHS or the hospital etc to get an appointment and also to start the ball rolling yourself ASAP on the statement front (which is what I did) since they take at least 6 months to go through.

More than happy to chat to you sometime if you think it might help.

Good luck and keep fighting.

Laura x

[Hidden]

Thanks again for your reply above. It does help to know I'm not alone-especially with the rages which no one else sees outside of the home-thankfully. I hope it stays this way but my daughter could really do with some help so I will chase our appointment with a specialist. It does seems incredible it's been two years and still nothing.

I've spoken to the schools SENCO about possibly getting a statement of special needs but she said there's no way my dd would be eligible; her symptoms aren't extreme enough. Her tics are mainly facial/physical and her vocal tic is a hum so, though she is teased and goes home upset and with an aching face, it isn't seen as enough for a statement. Much of her suffering is hidden I suppose; racing thougts, dark thoughts and OCD. Of course when her tics are bad they interfere with her ability to concentrate but at primary they are reasonably understanding and allow extra time if needed (in break!)

The SENCO said I could have her needs formally noted if it helps but that the best action at this point is to visit the senior schools and see how open they are to supporting my dd then apply out of catchment if I want to. Only problem is, I don't want to run the risk of missing out on: 'my no 1 out of catchment supportive-local-school'. AND my'in catchment not-very-supportive high achieving-local school' where she will know people and instead get left with a school miles away I didn't want at all! Tricky isn't it when our children fall in a grey area of needs?

All the best, Dawn XX

[donnellyK in reply to Hidden]

My heart went out to you when I read your story. My son was diagnosed with TS at 7 he is now nearly 13. From year 4 at school I would ask if behaviour in school was Ok as at home he would fly into rages by year 5 would just send him home as they didn't know what to do with him. I asked for a statement because even though he didn't have learning difficulties he would easy forget what he was doing and concentration was low and he wasn't achieving as he could be. I was told no as his symptoms etc weren't severe enough. He scrapped through year 6 his SAT results being much lower than expected. Within weeks of starting secondary school there were problems from travelling on the school bus to lessons and growing anger. In year 7 I asked for a CAF and educational psychologist eventually they agreed. Within the first week of year 8 he was excluded and at a meeting I asked to see his CAF it had not been done a whole year had been wasted he was very stressed and anxious and very angry and violent at school and at home. The school have told us to look for another school in case his return is not possible with the danger he might pose to others but without a statement it is more than difficult. My advice would be you know your child best keep pushing i wiah i had, anger management should be started as early as possible. It really is a grey area for these children and unfortunately it's them that miss out whilst the authorities mess about I don't think TS is taken seriously enough some of the symptoms have a terrible affect on the whole family even worse the kids have to live with it often coping with the symptoms you can't see inside there heads . I wish you the very best of luck .