Elouise
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Posts posted by Elouise
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I am so sorry your having to go through such a tough time as a family.
Hoping that some good comes from this that helps you all.
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Both the Glactosemia Society and the Vegan Society produce lists of products that are totally free of milk products.
I use pure veg oil and vegan cake recipes for Sam; avoids the problems that milk and eggs cause him
Wysoy is not great for kids with milk allergy but it is okay for milk intolerance as it still contains some milk proteins that can play hob with a kid with anaphylaxisis. I am pretty sure Heinz Nurture Soya is the only milk protein free formula you can buy without a prescription.
Some soya products contain milk. Those bearing a vegan society mark do not.
Sam had blood tests showing excessivly raised IgE's, his skin was blistered raw and bleeding. He was covered in lumps bumps and was as sick as a dog until every single hint of milk protein was removed form his diet. If Sam had any milk even if it was in washing products it made him ill enough to need a trip to A&E.
The hospital arranged in-patient food challenge tests for each new protein as it was introduced back into his diet. I found that if you do have a child with a serious problem with a food group you get taken seriously.
Please watch out for milk in laundry and washing products if you have a very sensitive child as contact with skin is enough to provoke an allergic response.
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LouLou,
You have tried everything you can think of and then some.
If you feel as exhausted as I did when Nathan went orbital I can understand why you need a break.
If Nathan had not been taken in by CAHMS I would have dumped on SS as the only option I had not tried to try and get him help and give my other kids a chance to be simply kids.At that point if I had not loved him he made my life so hellish I was so exhausted and run down form his behaviour 24/7 and I was so concerned what he might do to the little kids I may have killed him just to make the awful noise and worry stop and so I could get some sleep.
Things have been so much nicer since Nathan has been diaognosed as having very complex needs that need very careful management and care plans in place in a special college; I get chance to have time from him and vice versa and they give him chance to learn skills I was too worn out to do. It has really helped all of us.
I am so sorry things have got to this point.
I hope this gives you all a much needed break and space to rest. I also hope it opens doors for Kai to get the support and help he needs quickly.
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I wish I could give a good answer.
When Nathan was being this vile; the final straw after a similar catalogue of horrors was finding him trying to stab Sam with the big carving knife; I had my elder daughter Jo round the little kids up and take them outside and lock themselves in my car whilst I stood between them and Nathan at full pelt.
When Nathan is home I ALWAYS carry a mobile phone and the house/car keys because bless him he can suddenly vapourise. You know things have got bad when your on first name terms with the local police at the local station.
and your speed-dial numbers are 999 and the on-duty emergency psychiatrist/social worker services.I speed dialed his psychiatrist and asked her to just listen..........
Nathan was given a 12 week in-patient placement at the regional CAHMS unit. At this point Nathans future looked like it was going to have to be a secure adolscent unit. I was so tired and beaten up I would have signed anything for some sleep.
This was four years ago.
Not a place I would want to go again it was utterly exhausting. I also reached the point of thinking Nathan would kill Sam or Annie before SS took the problem seriously. [Ha one suggestion was letting the younger kids be temp. fostered and leave me with Nathan!]
Nathan was finally assessed by level 4 CAHMS as extremely stressed and distressed, having a severe anxiety disorder and severe depression. CAHMS sorted out the right drugs and worked with Nathan to find ones he was willing to take and in forms he was willing to swallow. That gave a small window to get in with.
He was supposed to have respite but even social services could not offer him a safe provision.
He was supposed to have a residential school placement ; same problems nothing suitable.
I had the police list him as a 'vulnerable young person' for when they had him.
I had to grit my teeth and wait another two years to get him into a residential college.
Art theraphy, a psychiatrist who was willing to spend a lot of time building up a relationship with Nathan, training in System 3 and a lot of support from his hospital school and now his residential college has begun to make a real positive difference. I have had to fight tooth and claw to get this for him too.
He can still have his moments but the difference now is one I could not imagine ever seeking when things were so b.a.
Its hard having to keep fighting for help. It is hard living with a child you love but whose behaviors you do not like. It is worth the effort to keep fighting because when we as parents feel we have to give up everyone in a family suffers and it is okay to say it is hard work, not fair and please give me a hand.
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Hallo Bid,
Sam grew up on an 'exclusion diet' supervised by the hospital due to the problems milk, nuts, eggs, fish and some beans were causing him.
It is worth the effort of applying for DLA for life threatening allergies (Sam carries epipens) as DLA is considered by the amount of extra care a person needs against another person of the same age who has not got such needs. Sam gets the higher rate care mostly because of his allergies.
I purchase Sam's food in bulk direct from Suma http://www.suma.coop/; they specialise in vegetarian and carry extensive vegan ranges including many soya milks and soya based milk replacement products and will deliver direct to your door. I tend to buy single item ingreadiants and the staff will help if you need a full ingraediant breakdown and explain why.
The BranTub in Malvern http://www.brantub.co.uk/index.html stocks a huge range of 'allergy foods'. If you are too far away to be able to use them then do use their website to see what specialized items are available in the UK and you could ask if they could suggest a supplier closer to your home. Again ask if anyone does 'bulk discounts'. It is often cheaper to buy a 24 tray of soya milk in bulk than to keep buying the stuff split into singles.
Another useful source is any independant local vegetarian shops, often they are willing to give bulk discounts on milk replacement products as they are used to serving vegan families.
Doing this saves me a fortune and a lot of time too!
Sam had Prosobee on prescription until he was 5 and able to eat more than plain rice, apricots, carrots and tiny pieces of organic lamb.
Cealiacs and I think those with galactosemia can get some basic foods on prescription but other allergy sufferers are not included. It might be worth chatting with a hospital dietician to check if their is anything covered by NHS prescriptions that you could ask your GP to prescribe other than the epipens, antihistimines et al.
When completing the DLA forms think about the amount of time you have to 'supervise' to keep your children safe; the care needed in food preperation, sourcing food and even the silly things like soap used for washing. I have made horrible mistakes there after being so careful with food like using Pears soap on Sam that ended with a trip to A&E, peanut oil, and another using a non bio washing powder trying to save some money that ended up in the poor boy covered head to foot in icthabands after his skin bubbled.Oops.
Hope that is of some help.
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The more I read this board the more I realise how fortunate Sam is to be at such an exceptional mainstream primary school. It well deserves all the awards it has won.
I have just spoken with the SENCO at the secondary school I hope he will agree to go to. She has offered to arrange for Sam to visit and attend some of the science classes so he can get a feel for what the school could offer him if he will agree to go. Will speak with her next week after she has had chance to look at 'part-time' school attndance under differentation for his special needs.
There are days I consider confessing to anything if only Sam would let me have some peace and quite I cannot even make a cup of tea without his chemical jokes about solutions and suspensions. Love him dearly but right now sending him on a science field trip for five whole glorious days and four wonderous nights when he can keep his teachers awake is keeping me going.
Mrs Fussy I concur when you find yourself faced with this level of ability and potential it can be utterly exhausting and somewaht scary. I had a hunch he was 'bright' but that brightness is becomming brilliance.
I want Sam to have a life he feels happy with. I want to make sure he gets opportunities to try things although the end of the day if he decides to spend his days driving Virgin trains and his days off bumbling through physics and philosphy that is fine too. I saw the mess my sister got into, her IQ is over 170 brilliant but very brittle! She holds a high powered responsible job yet cannot get her own shopping and needs me to go round and give her task lists of what she needs to do for the week just to survive.
The suffering I have seen her endure from being gifted, talented and ASD is something I would spare Sam if there is a way to do so.
Sams school offers gifted and talented extra maths, and english for the most able pupils as 'for fun' classes from year 1 and will consider exceptionally talented (and bored) reception year children. Got to admit this was led by the headteacher who makes time to listen to the concerns, likes dislikes and ideas of her pupils. It MIGHT be possible to link in to some maths and science activities for fun through Humanities & Science Education if the school is struggling to offer anything
Good luck with your son and keep fighting his corner with him, its hard enough being differant from ASD but gifted on top just tips these kids into utter 'geekdom'.
IF I ever manage to get through to NAGC I will let you know what is on offer (if anything) for dually exceptional children.
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Have you contacted 'disability support services' to see what is on offer?
They may be able to support you to find the right accomodation for you.
Have a look at how the university you have choosen runs its various Hall's before deciding that is not for you. It may help if you give details of things you like and things you dislike and wish NOT to happen to those trying to arrange accomdation in the Halls.
I prefered halls (rules) to trying to house share *!* halls were quieter and quiet matters to me.
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Thank you both; it is good to know I am not alone in dealing with this dual force.
Sam's ASD is one thing his intellect is another.
I have asked to speak with the SENCO at the school I would prefer him to go to IF he will agree to discuss 'part-time' . They have a very good SEN and a good G&T (I know it is as Jo when she can be bothered uses it)
HECK they even have a physics teacher who is as crazy about Physics as Sam if only I can persuade Sam to agree to meet up with him.
*SIGHS*
I have to admit Nathan with his autism, dyspraxia and severe mental health problems is less of a handful than Sam. At least he does not use philospophical arguements to prove black is white from another perspective.
Experiance has taught me if anyone is going to be dishing out the good kicking it will be Sam (thats the ADHD) There is the special secondary that took Nathan BUT Sam was not impressed at them having one general science lab and he corrected the students work on the wall when I took him last year to collect Nathan.
He could sit for a grammar but I doubt anyone could persuade him to sit the 11+ and I doubt if he would take graciously to the homework regime impacting on his DIY inventions.
If he would agree to study science and maths at school I can handle the rest at home but that wil require some fancy negiotiation to achieve. His current idea is to do science at Uni and everything else at home.
Crystaltips I have already started to enquire about a hometutor for science who can cope with massive temper outbursts. It was those outbursts that got him a place in a specialist ASD nursary for nearly three years.
They always seem to be at their worst when his brain is going faster than his communication can keep up.
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Sam is now officially scaring me. It is bad because I am failing to find the humorous side of things right now. I just feel constantly shattered living with a cross between Dr Evil (his temper), Mr Bean( disorganised and social ineptitude) and Einstein.(OMG that boys mind!)
His latest idea was 'Mum if you let me homeschool you needn't worry about teaching me, I will teach myself' this was after a morning of questions that left me wondering where his mind has come from I know our families throw up very bright people who are well 'quirky and odd' but it doe snot normally show like this. I know I have not the ability in science and maths to keep up with him anymore even if I try.
6am was not a good time for this sleep deprived mom to cope with 'If hydrogen is the foundational atom of the entire universe why can we not find God inside the hydrogen atom mum is it in the Higgs Bosun?'
The day before that he was giving his teachers grief for organising some classes at a university for him to go to simply because the 'physics is not pure'.
Sam is 10 and he seems to have taken a huge cognitive and intellectual leap over the last month that has left me staggering and wondering how on earth I can support him and how will he survive as a teenager if he is champing at the bit now.
He still has major meltdowns over any science experiment that he considers 'an unfair test' , the last one was so bad the teacher had to clear the classroom for the sake of the other children (who wants to be hit by a hurled chair!) then he burst in floods of tears and screamed and screamed that fair had to be fair or it was not fair and how could he test anything if he could not achieve fair.
The school have been brilliant.
They have bought in a secondary science teacher to help them differentiate the curriculum, they have pulled in the 'VTS', they call me when he has one of his 'little moments' and welcome him back as soon as Sam feels able to cope again but he is still insisting on being 'home schooled'. The local secondary school invited Sam to come and see their science labs, computer suits, maths rooms and engineering come technological facilities.
The little **** has also refused to take any form of IQ test from the Ed Psych on the grounds that 'If I show them how clever I am they will always want me to be clever and I am not that stupid!' There is logical reasoning in his approach but he is shooting himself in the foot as he does not know what to do with himself and complains he does not want to work at science with other children at school because they are 'stupid' and he even told some of the teachers they did not know enough about science to work with him either.
Has ANY one else had to face the dual force of Aspergers and a intellect that is not merely bright its positively incandescent. My concern is if he keeps driving himself for 'perfect science' he will have a 'breakdown' and I am struggling to find anything in the time I have that can give some helpful tips.
Has anyone used 'part time' secondary education or virtual 'classrooms'? with a child like this.
I need to flag my choice of secondary school by the end of June ready for September. Whilst I am fairly sure what to look for to meet the aspergers side of him I am at a lose to know what I should be looking for as far as intellect or if I should let him homeschool or try and pick my way through the nightmare of pushing for something 'bespoke'.
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Occasionally JUST occasionally kids do win in the rotten education system. It can take some fighting though.
Nathan has been classed as gifted and talented in art due to his visual spatial reasoning and conceptionalising. Currently the lad has his eyes on a fine art uni course after his special college. His IQ was assessed at 110 when he was seven, bless him he simply could not answer the word questions..
Sam has walked out of every IQ test his ed psychologist has tried to asses him with on the grounds' I am not THAT stupid if I do this everyone will expect me to be good at everything'. What matters to me more is he is reasonably happy at school, is given access to a SULP group that helps him practise social skills and is allowed to shine in his area of outstanding ability as Sam becomes very destructive and withdrawn if he is not allowed to.
Sam *ngghhhhhhhhh....* has a diagnosis of Aspergers Syndrome, ADHD and *dear God...help* he is gifted and talented in science to an alarming degree.
Sam campaigns for home education with ruthless determination , he has even handed in his notice at school.
I cannot fault his school. They provide support in his areas of weakness with recording written work and allow him to have a differentiated curriculum in science. Sam is in year 5 but has been moved onto the secondary schools science curriculum and his primary have arranged for a specialist science secondary teacher to provide his differentiated lessons.
Jo is also rated as gifted and talented in science, maths and music *whimpers*. How she can listen to a complex piece of music and get it note perfect after a handful of goes and teach herself to play such a wide range of instruments is beyond me....thankfully her school is listed as a technology and music college. I have arranged nothing Jo does all the running because I worked on the theory if Jo REALLY wanted to access something she would sort it herself and scarily she does.
Even Annie *lost in time and space* is beginning to bounce out. Despite her complex SpLD and mainly thanks to all the extra OT and physio the school arranged on top of very specialist language support she pulled her class teacher up with 'Allenberg is okay if you just like rhyming but I prefer Coleridge, how about we look at Shakespheres sonnets instead?' and then went on to explain what one of the sonnets was about...in detail....Yep the SENCO has asked me to come in again on the grounds that the difference between Annie's written and vocal work is getting greater.
My kids watched that program, they voted that they swap places with the other family of four as 'an experiment to see how long those parents could cope with real kids' and Nathan seemed particularly keen to do so. I think he did not like the mother and wanted to know why the dad always sat there looking like a fish out of water.
Jo recommended that the mother should go off and 'do her own university course if she is so darn keen on doctorates. Sam suggested packing and taking his chemistry lab and Annie said they should be made to watch 'Disney movies for hours on end. *Annie's idea of a serious punishment*
The only parents I liked were Dantes, they did not care about how high a score he got in his IQ test, all they cared about was Dante being happy. That is really the bottom line. Many gifted children get ground down by unreasonable parental and teacher expectations and they do munch huge amounts of parental time and energy, I can see why most of the parents went with the flow of the area of ability rather than slow things down and set a gentler pace. Jo would not talk to me for weeks when I refussed to allow her to sit for the local nationally rated grammer and sent her to the local tech and music college school instead. She now admits she has more time for fun than her friends who have more homework.
Will my kids keep this level up as they move through the adolesence, who knows? They may end up being happy train drivers who like to spend their evenings on logic puzzles.
Parenting gifted kids is hard work. Parenting kids who are gifted and who also have a disability can be a surreal nightmare. Ha if they need a contrast they could have filmed my lot in action....except for Sams ability to strip an expensive TV camera down to its many pieces in a few minutes and Nathans desire to control all the editing as he loves photography and film and Annie who spends all her time hiding in her Scary Mary hoody and Jo and her friends endlessly debating philosphy whilst creating their own music......
I have just remembered why I go out to work. I NEED the R&R.
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Sam definatly has Aspergers.
At 3 his speech was delayed.
He does not have autism as Nathan does, he has word finding difficulties* and that truly slowed him down and required input from a specilaist nursary at a very early age
(Sam was in a special nursary from 2 and placed in a special school dealing with autism at 4, by 5 thanks to intensive speech theraphy he was included in mainstream as he could make himself understood even though he still has the 'oddness' of speech associated with Aspergers.)
*Sam is classed as being gifted with complex specific learning difficulties*
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Nathan started at his residential special collage on monday.
The house is so quiet.
I have suddenly found out that my idea the lad was taking up all the hours in the day to care for....was true!
I suddenly have this weird thing called l-e-i-s-u-r-e time but at the moment I have not a clue what your supposed to use it for having spent 16 years trying to pre-empt Nathans crazy ideas and weird ways of doing things.
I thought MOST of the noise was Sam at full pelt. It appears to have been generated by Nathan and Sam mixed together.
This is going to take some getting used to ut Nathan has choosen to come home friday night to sunday night so that should help remind me WHY I fouaght to get him tht college place in the first place.
Bless him he never even said goodbye when I dropped him off just gave me a shoping list for all the CD players he expects when he comes home to collect them this weekend.
He is going to be one sad boy he can save up from his allowence.
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Sam is not in the savant group but the flamming little overactive pest is classed as gifted and talented as well as having special needs.
Joy oh joy it is not.
Do I NEED discussions about Quarks from a 9 year old at 6am in the morning do I HECK.
Sams statement is now over 8 pages long.
The first bit details his special educational needs from aspergers and adhd.
The second details his gifted and talented status in;
Engineering
Spatial awareness
Maths
Sciences especially chemistry and physics.
And bless him he keeps cracking the computer codes and passwords at school.
*Thank GOD his school is open tomorrow he is standing behind me asking yet more questions about compresion seals*
So I contacted this lot who DO provide information on 'dual ability' children and young people (duel meaning they have special needs that affect their ability to access learning but by crumbs are they BRIGHT)
http://www.nagcbritain.org.uk/
So far since contacting them Sam has founded a Science Club at school, joined The Young Engineers and blagged his way on to the school council to rep for special needs!
He is 10 next week and wants to skip secondary school and go straight to university as he has read the secondary school science books already. He is developing a similar level of varicious appitite to learn history too so I get out of his way and let him get on with it.
No one has successfully assesed Sam's intellect with tests come to think of it his aunt has an intellect that rages at over 150 and its caused no end of trouble.
Sam like Nathan he refuses to co-operate and runs off laughing at the invigilator
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Nathan was non verbal by 3 he was using the odd....very odd...echolic word.
He did not begin to use single words in any context untill he started at his special primary...by year 6 he was using whole sentances.
At 16 I look longingly at the gaffa tape.
Nathan makes up 30% of his own sentances and applies echoed sentances the rest of the time and can get an approbraite echo almost 80% of the time.
The downside now is when he is awake he does not stop talking at all.
From the sublime to the ridicolous.
Sam did not verbalise and screamed from a mix of word finding difficulties and adhd.
Once he discovered technical jargon he was off at 4 1/2.
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I asked Jo (eldest emo/goth daughter) after she finished with some daft comments about bondage wear she suggested you try dance shops as they will also do long length skirts and leggings in lycra stretch that might be warmer in the winter.
You can also buy lycra stretch trousers meant for dancing.
If you have not a dance shop near you try on line theatrical suppliers. They specialise in producing lycra and stretchable costumes. They may be able to provide material too.
Surfwear is a good alternative too.
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Sams mainstream school HAD open plan classrooms untill they had Sam.
His was the very first classroom to be fitted with a wall and a door.
He LOVED open plan he thought he could pick and mix what lessons he could do so every english lesson he zipped off before anyone could catch and detour him into maths and science in other classes and years instead.
The headteacher decided she had to use clearly definded bounderies in the form of walls and doors as drawing a line on the floor meant NOTHING to Sam.
You can spot which year Sam is going into next by the arrival of the guys with the partition walls and doors over the summer.
Nathan tried a term in an open plan classroom....he was reduced to a screaming rocking wreck, he could not cope with the noise and movement all around him.
Sam just speeds up.
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Note for Annie.
IF you need to act as the 'named person' for your kid make sure they have included the application form for that with the re-application for over 16.
Otherwise the money is only paid straight to your child.
They forgot to send the right paperwork for that for Nathan.....so he was awarded the money but the DSS have been sitting on it for the past two months as the two sets of paperwork were not together.
* Free road tax only applies if the vehicle is registered in the name of the disabled person. See here
http://www2.careline.org.uk/Doc.asp?WSDOCID=195
DLA is normally paid four weekly.
It is normally paid to the parent untill the day a child becomes 16 then its paid directly to the disabled person unless you have sorted out being the 'named person' on their behalf.
That means the DSS send someone over to interview you and the eprson you care for to ensure that the disabled person has not been 'pressured' into signing over thier rights. *Which is a good idea but does make another hopp to jump through just as your sorting out post 16 provision*
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For the sake of that 3 year old....call the NSPCC and have a chat with one of their advisors.
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Annie has the sort of handwriting that makes me wince and puzzle over never mind her poor teacher.
She is listed on school action plus as having severe SpLD along with a fe wother things that make us all go ???
To encourage her attempts to scribe her own work Annie writes her efforts first with encoragement
After Annie has had a good go rather than correct all over Annies' own work (which makes her cry) her teacher gets Annie to read back her work and writes a clear version underneath.
If Annie has made an exceptional effeort her work is pinned up so other know what a good story she imagined . I challenge anyone to make sense of Annis handwriting.
Perhaps the school has a similar policy for this type of SpLD.
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Unlikley, Nathans bad VER bad. Always has been.
I sent in his frst DLA form before his formal diaognosis and was refused.
I sent it in exactly the same wording with the formal diaognosis two months later and he was awarded the higher rate for life.
The DSS still uses the medical model to allow access to DLA.
Sam has ADHD, Aspergers, Anxiety disorder and is gifted and talented in maths and science. Again the diaognosis opened the doors.
It might be worth asking your GP for another referral back to the CDC or child and family psychiatry.
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Nathan is 16, he still has some of his baby rattles (he LOVES them) his trapdoor DVD that replaced his beloved Videos and he stil sneakily watches Cbebbies.
He once said it reminds him of being little safe and happy and when he is stressed he wants to be safe and happy.
I am just grateful he does not want to sit on my lap to watch them anymore!
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Nathans dyspraxia truly shows in his complete inability to organise and sequence.
Its like watching an animated coathanger trying to tackle space and time.
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Sam has ASD, ADHD and yep *thanks to a visit to CAHMS this week* anxiety disorder as well.....no wonder I was having toruble with him of late!
Sam gets VERY emotional, but its extremes of emotion rather than the naunces in between so he is terrified and shaking, happy and flappy or raging screaming and cross with opptional biting and furniture throwing.
He also sets fires, not from CD but from an over enquiring mind that does not have common sense.
His brother Nathan is just classed as extremely challenging to deal with and social workers only visit him in pairs.
Annie my youngest. is listed at school on her IEP and School Action Plus as having emotional and behavioural difficulties from being emotionally hypersensitive.
I think if there is a family history of anxiety based mental distress AND ASD its worth getting as much checked as you can so you know where to start to help your son.
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Two months is pretty fast to get a joint pead AND psychi' appointment.
Sam got his ADHD diaognosis tentatively at 18months definately by 2 and you had better beleive it heres ConcertaXL by 3.
It was a systematic observation of Sam over 6 months as well as questions task setting and observation that clinched the actual ADHD diaognosis.
You may NOT get the actual diaognosis this time it may be the start of 6 months of observations to jump NICE guideline hoops or they may well be able to use all his previous CDC etc. notes.
Sam no longer takes drugs (because in h8is case the uber greepy anxious paranoid aspergers that oused out of every pour scared the heck out of me more than the stunts he pulled thanks to ADHD)
Dr Christiphers Greens Book is VERY good, and if Tyler is super explosive then I found 'The Explosive Child useful for behaviour startegries and targetting when I did need to make a fuss.
Hope things work out well for both of you.
score on YOur iQ test for as?
in Beyond Adolescence
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Rough rule of thumb.
An IQ result of under 80 would indicate a possible learning disability. The lower the figure goes the more significant and impairing the disability may be if a persons needs are not meet.
An IQ result of over 130 would indicate a possible level of giftedness that could cause problems. The higher the figure the greater potential to cause problems if needs are not meet.
The huge majority of the population (50% approx) fall between 90-110.