Aspergers/Anxiety

[Greengap13]

Our 11 year old DS became unwell just before Summer. Top of the class general all rounder etc... Out of the blue presented with a seizure like attack. After umpteen invasive tests ( MRI, EEG's.lumbar and every blood test under the sun ) and admissions throughout the summer he has finally got a diagnosis. Aspergers suffering from anxiety.
As you can imagine hugely shocking, stressful and sad for the whole family. We've been given a referral for Collingham Gardens Children in Kensington and was wondering whether anyone had used it? I've visited both the unit and Accorn Lodge which is also an option. I found the Collingham very homely and I like the fact the children come home every weekend.
I would so appreciate any recommendations/feedback or similar experiences.

Hi OP - Wow that's some shock for you and also for your DS as well. My DS has Aspergers, but luckily was diagnosed earlier than your DS.

I'm not familiar with either of the schools. There's a load of lovely parents in the SN Children or SN chat topics that know a lot about schools and diagnosis and the rest and that may be the best place to look. You need to opt-in to the SN topic, so you may need to go into Customise if you can't see it here.

I know your priority now is to look after him, but from experience, don't neglect your own well being as well. This is a massive shock and change for you as well and going to talk to someone about it now could help you come to terms with it too.

all the best for you and your family

I'm sorry to hear your DS is unwell. May I ask if there is any reason why you are looking at inpatient/ residential schools so soon? I was a little older than your son when I was diagnosed with OCD and anxiety, to begin with my own school kept me on and I later progressed to another school for people with SN, behavioural issues etc before becoming a day patient and finally an inpatient.

Unfortunately for me the inpatient situation was against my will and was very traumatic and distressing for me and my family. It still hurts me 8 years on and means I will never truly trust my parents or a health professional again. Myself and the other young people on the ward were all deeply unhappy with the inpatient status. I really wouldn't recommend it at all.

I have a 13 yo dd with Aspergers, she was diagnosed age 7, she also ha anxiety.

I'm very confused as to why you would consider a residential unit at this stage. Are you unable to have your ds at home?

I think you need to come to terms with the diagnosis before making such s major decision.

Am also confused about the residential unit?

Huge sympathy to you and your DS. DP has Asperger's and has described his awful difficulties with anxiety as a child.

i agree never been on this site before but like the idea of neutral advice. my son who is six has similar issues

could use some advice too

This is the most difficult decision we've ever been faced with. The difficulty is he fell ill 5 weeks prior to finishing primary school and is due to transition to Secondary in September. The trauma he is experiencing is all triggered by school. Ds has nightmares where they lock him in, force him to jump out of windows, amputate his legs! He's in a really bad way and has ongoing seizure like attacks, amnesia, blackouts etc...hence all the invasive testing and hospital stays (a month in total.) We are a very close little family (dh and 4yr old dd) with a large network of friends who have supported us through these last 3 months. Both our families live overseas.Our ds currently needs 1 on 1 care and even in hospital one of us remained with him at all times. Dd has been farmed out to various friends throughout the Summer as she is energetic and loud which triggers him as well. Dd although very resilient has her own medical needs ( gastro and allergies) and is on 10 different meds a day. The whole situation is unsustainable. If he went to Collingam we would all get support we need to prepare going forward. He was only diagnosed last week! They would reduce the anxiety he would have sensory integration therapy, occupation therapy etc..all under one umbrella. At the same time we could establish his sen needs and they could reintegrate him into school. I gave up my career to be a stay at home mum and potentially set up my own business so one would think I should be able to deal with this from home, however it feels beyond us and we feel ill equipped. I grew up with a brother who was AS & finally at the age of 17 was misdiagnosed as schizophrenic ( they didnt know about As back then) after a breakdown. My mother tried desperately to deal with it from home and it destroyed her and the whole family. This as you can imagine is my worst nightmare. I love him more than anything and just want to the best for him and us. It's unbearable watching him suffer...I feel so helpless.

Greengap - I can see where you are coming from with the residential unit. Getting access to all of those interventions is an opportunity that I don't think you can miss. When DS was diagnosed, we were left to get on with it, only with local parent support groups for help and its clear that you and your DS need more than this.

If you are looking at short-term intensive support, then I'd say to go for it. I can only imagine how hard it would be to split up your lovely family after such a hard few months and the shock of this diagnosis, but you are absolutely right that you need to look after all of you, including DD. I think you're right to recognise that your DS needs specialist help alongside the love and support you and your DH are able to give him.

I'm going to reiterate here that you need to look after yourself too and look at some counselling for yourself to deal with this.

Greengap after reading your update I understand more about your situation and my first post seems inappropriate now, my apologies.

I had years to come to terms with my dd's diagnosis (and some fantastic counselling). Your situation is very different. The speed and severity of your poor ds's symptoms must've been so scary for you all.

This referral sounds like a good opportunity for your son to get some excellent quality help.

I wish you all the best.