Advice please (newbee)

[emotink]

Hi, Im new on here and am after abit of advice. My 11 year old son has aspergers and moved up to secondary sch last sept. He hates sch (always has) and things have recently taken a turn for the worse. He sees his paediatrician 6 monthly due to previously having had a diagnosis of absent seizures, but this is now in question due to having had his meds stopped a couple of years ago. I am sure I have seen a few small seizures and he is often complaining of bad heads to the point of crying. We are due to see a specialist next month about this as his last eeg showed nothing but his previous 2 showed sharpened transients but not enough for a definative answer. He is currently complaing of headaches most days and we think alot of them are due to his high anxiety/stress levels regarding sch. Academically he is ok, he seems to be avarage to below average in most things, but not low enough to have anything on his IEP (which just contains things like where to go when feeling unhappy, trying to give him a possitive outlook on his having aspergers etc). As parents we are really struggling to cope. I hate dragging him into sch, he cries most days about having to go and cries daily while there. We have a meeting set for next week at sch as this cant continue. I have looked into the possibility of pulling him out and home schooling, but as both me and hubbie need to work, I cant see how i can do this. It is heartbreaking to see him like this. The other day he asked if there was a tablet he could take to get rid of the aspergers... when I said no he broke down "you mean I have to live like this always"! He often comments about how he wishes he had never been born, that he has no friends and is stupid. He used to go out on his scooter with his younger sis, but has for the last 6 mths has not been out 'to play'. He has always been scared of 'bigger kids' to the point that he now doesnt go out and seems to be becoming more reclusive opting to be on the xbox, watching tv or watching people playing there xboxs on youtube. His outbursts are becoming more frequent and over silly things and he is on occassion aggresive towards his 9 yr old sis. At his age I realise that hormones are starting to come into play, he is so unhappy and this is having a effect on all of us.

 

He was diagnosed aged 8 at camhs, we had a follow up app a couple of moths later but have not been back since. He used to see SALT regularly as he has a diagnosed language disorder but they discharged him years ago as we were told there was nothing more they could do. He had a sensory diet done by a OT via cahms 3 yrs ago- never seen since. He saw a epilepsy nurse but this stopped after his meds were stopped. We had a visit from a social worker shortly after his diagnosis, but was informed that due to the amount of agencies involved (at the time), they wouldnt be involved. We have been told that he only sees the paediatrician because of his epilepsy and he does see the sch nurse due to having nocturnal enuresis. As parents we feel like we are just managing to keep our heads above water.

How do we get more support for him at sch... he has openly asked for a TA but was told by a teacher that wouldnt happen due to funding.

How do we as a family get more support? We feel that we should have more people invoved but who?

Any advice would be great

 

Nic

[oxgirl]

Hi Nic and welcome, so sorry to hear your lad is so unhappy at the moment.

Regarding the headaches, has he been looked at for migraines? My son used to suffer with debilitating headaches that got so bad that he used to vomit and, as his father was a migraine sufferer as a child, he was put onto daily medication to reduce the headaches. He was also investigated for the posibility of absence seisures when he was young, but this was discounted. The headaches were caused mainy by the stress of school and the fact that he wasn't coping, the same as your son.

Is your lad getting any support socially? Some schools have 'buddy' schemes where they get groups of children to befriend others who are struggling. Have you spoken to anyone at school about his isolation, as this is so stressful for children to feel so alone. My lad had no friends at school either, so I know how painful and damaging it is.

 

~ Mel ~

[smileyK]

I HATED school always surrounded by endless fears/worries/anxieties (socially,academically - trying to "play catch up" fit slide in somewhere anywhere and craving "perfection" constantly throughout everything I did! Which just seem to add pressure within myself I had overwhelming dread and panic fill me when GCSE's fast approached! Feel scared/worried about what was expected from me so much I felt couldn't reach too far all time! Felt disappointment /fear which wasn't 'nice' has he expressed any fears/anxieties he feels around facing school environment? I would approach LEA and explain your son's current situation and how this affecting them? And may put forward some practical suggestions/ideas to you to move forward successfully?! Have you contacted NAS (National Autistic Society) or looked up on their website to see if they have any useful ,helpful pointers which may lead you in 'right direction' forward in which can approach ahead! I can purely empathise with your son's situation! I know it isn't easy to face head on! It's can be so frustrating when services discharge leaving you and your son where you go,what to do next?! Can be confusing place to be wondering what future holds! Services don't know what to do with you or where to go next as faced with so many challenges/obstacles against you isn't made any less easier or less stressful by being turned away closed door situation by every service can be sole destroying for your self-esteem can damage it even further! Can push you to the limit to intense extremes which utterly overwhelming! I'm currently wondering what service can do what with me next?! Before discharging me from them onto next pushed from 'pillar to post' makes feel more rocky,unstable/unpredictable

[smileyK]

* it is common for "us" to get headaches I get bad tension headaches from worrying/anxiety which builds up physically shows up through a bad head which travels right down back of my neck also it is unpleasant/nasty

[Suze]

Hi nic, my son had petit mal type seizures at high school, he used to switch off and shut down with all the sensory stuff going on.Your son may benefit from a quiet area during break and dinner where he can go to relax and recharge himself.My son used the SEN zone at school.Also stress can be reduced by letting him leave classes early to avoind the crush in the corridoors etc.If you can ask the senco at school to get the local authorities autism advisor in to offer some guidance in making school easier for him.Write all your worries and key points down to take to the meeting with you and take another adult for support, don,t go on your own........also olga bogdashinas book sensory perceptions in autism is brill and worth a read, your son sounds as if he has alot of sensory issues .Best wishes suzex

[Merry]

I really feel for your son, having aspergers myself, and for you both as parents, as i'm also a mummy and can't begin to imagine the pain and struggle you're both experiencing as a result of watching your son go through all of this. I can't offer any advice on which services could help you i'm afraid, but others here are good at that, as you've noticed above! I just wanted to say hello and that I wish things were easier for you all. I can relate to your son's hatred of school. He probably couldn't even begin to explain to anyone the intensity of his feelings about being there...the over stimulation, the complicated social exchanges which take all of his energy to get through each day....basically, I would liken it to being driven to Spain for your job every day.-And being expected to function in a foreign place where you can't understand the language, culture or customs, everything looks and feels strange, and you can barely find your way around. Then you're allowed to return to your safe place each night, but the people you love always seem to be buzzing around like they're living by another timescale. They like to watch tv which is always too loud, then they talk over it, then the phone rings......you're expected to fit in with their routines even though you've had to spend all day fitting in already. They think you should socialize...but you've been struggling in social situations all day. You don't understand the world around you but you're expected to just get on with things, without questioning these very basic and important questions. It feels like you're having to build a life on no foundations, because no one ever answered these primary questions for you from the very beginning. Why am I here? Why do we live the way we do, in a way that feels very unnatural and so fast paced? Why are we always busy and never supposed to stop and think? (For hours and hours like i need to!) Why am I different? What am i here to do? No one can tell him what life's all about, no one can answer all the important questions. And no one can take his pain away. Giving him a lot of time to himself in an unstimulating environment is probably the best thing you can do for him to enable him to cope with school each day. It must be heart breaking to know that home schooling would be the answer but that you have no way of making it possible for him. I could almost feel the love in your words. You sound like very loving parents. I so hope things begin to improve soon.

[emotink]

Thanks all for the replys. Its nice to know were not alone in this. We have heard from his paediatrician who is going to refer us to the autism spectrum team for help and support, but were really not happy with the school as we have had our app moved from next tues (the 22nd) to the following tues (29th!!!!) as the senco is unavailable till then.

He doesnt want any 'special treatment' as he see's it, so doesnt want a buddy. He thinks people will take the micky out of him and prefers to hide out in the ARB unit the school has at break/lunch.

We are starting to see a pattern regarding the headaches as in they are definately less during the weekends and holidays, so it looks more to do with the stress and anxiety he has. The problem is that he says calpol and ibupofen doesnt seem to help and we are reluctant to try co-codamol as it causes constipation - this can be/ is an existing issue due to his fussyness with foods/poor diet.

[smileyK]

I try to now 'keep away' from taking anything pill wise for my tension headaches but when too much have too as reduces me to tears and makes me feel so drained /tired! The "special treatment" feeling is quite common within in ASC community me included in this how about local social groups in your area? It' sad to think that your son feels no option out other than to hide himself away from the social interaction so don't get 'hurt','damaged' so he trying to shield/barrier himself against this from happening which I have/still do this myself! To protect himself from bullying that may occur! This sounds like it's way he sees himself linked/connected to his self-esteem and past experiences/situations where he has been 'hurt'damaged before so can't blame him for wanting to isolate himself from the world!

[Sally44]

Do you have a copy of the SEN Code of Practice? If not download it from the SEN Publications section at the top of the Education Forum. Read chapters 7 and 8.

 

You really need referring to a Clinical Psychology team that works with children with an ASD. Clinical Psychology is about how the brain works and looks at therapy, approaches, strategies, support for any kinds of psychological problems/difficulties. CAHMS is the psychiatrist department and usually deals with medication and not therapy. Medication is fine, if needed, and when everything else has been tried.

 

My son became physically and mental ill due to anxiety when he was in year 4 of primary. He spent all year 5 out of school. We went to an educational tribunal and we named an ASD specific independent school for children with around average cognitive ability and we won. Our son was assessed as being around average cognitive ability [like your son]. But he was not coping mainstream. He was not making progress. He became highly anxious and developed a nervous cough [which at it's worst was him coughing a single cough 17 times each minute of every day! He also developed headaches, tummy ache and would vomit in school so the extent that prior to him refusing school he was only attending about 3 days a week.

 

So I would advise that you read the SEN Code of Practice.

That you get a referal to a team of CP's that work with children with ASD.

That you start putting everything in writing to anyone you have contact with [including school].

That you start to keep a daily diary of everything he says.

 

My son also used to say he wished he was dead, that he was rubbish and stupid. He started self harming and it was a really awful time for over a year. He did not go out at all. He developed an Anxiety Disorder and OCD.

 

It makes me so mad that SALT discharged him. He has a language disorder. That is for life. He will struggle with receptive and expressive language. His difficulties with language will cross over into his learning and social interactions. He is self aware and knows that he is different. He knows that he is struggling and he blames himself and "aspergers". What it actually is, is that he is probably not in the right school or in the right peer group. But Local Authorities only have mainstream or special schools. And because he is average cognitive ability he is not suitable for a special school or even an autism unit attached to a mainstream school.

 

Contact your LA and ask them to send you their list of maintained, non-maintained, approved, independent and special schools for secondary aged children. That list will show you where your LA is currently placing children like your son.

 

You will also find websites such as www.ipsea.org.uk useful for information and advice.

[Shnoing]

When I was 11-12, I had terrible headaches (migraine) just after school and I had to lie down in a darkened room for about half an hour. This went on for about 1 year. I had no dx then ...

[trekster]

Could he have a problem with light? I used to get severe headaches until I got tested for visual stress. A few years with colorimeter glasses really helped with my headaches and sensory issues. Even made concentrating easier but unfortunately without a diagnosis at school. Another possibility is that his eyes need testing.