westie

I have two children, with a 6yr age gap and they both have autistic spectrum conditions. My eldest was already diagnosed when we decided to try for another. I did not seriously think he would have any problems but he was diagnosed when he was almost 3 (both my children are high functioning, and dont have any serious health issues accompanying their autism though they have things like excema, hypermobile joint poor muscle tone which many children with autism have as well). I don't think I will have any more children, for me it is more than enough for us to cope with. Its a personal thing though, I have met many families, some large and some small and often with more than one child with autism or other needs (medical as well). I think if you want it then you will cope and find a way. I would in your position consider and write down all the possibilities of your possible decisions to have/ not have another child. (i,e, not having a child, having a child, having a child who is then diagnosed with ASD, having a child who is then diagnosed with another medical or neurological condition, adopting an older child) And then for each try and think about the positives and negatives of each scenario and ways of minimising the negatives. I am sure if you did this from the heart and compared possible decisions and outcomes it will become clear to you what your decision will be. If you have another child you will have no way of knowing if the child will have autism or another medical condition but at least you will know what steps you can take to minimise negatives if this did happen, and you may identify many positives as well so even if it did happen that the child was on the spectrum you have thought about how you will manage/ cope. You know yourself and your family best and comparing it to others (who may be more or less able to cope for a number of reasons) may mean you are influenced to make a decision that is not really right for you XXX Good luck p.s. Am I right in thinking you have two children now (an older sibling of your child with ASD?) p.p.s. we had genetic counselling after youngest was diagnosed, they took a very detailed family history, my youngest son had blood tests to check for genetic defects and fragile X etc. They did not find anything. I took eldest to the appointment (they had asked me to) but he has never been tested for genetic defects like fragile x etc. And they never even spoke to, looked at or examined him. They looked at youngest's skin to check for signs of a particular condition associated with autism. And they they said any further children I had would have a higher than usual chance of being on the spectrum (cant remember exactly it may have been 25% increase over normal population), and said that when our children were older and if they wanted to have a family they ought to come and see them if they wanted. And that was it. Not sure what else I was expecting though! If my son had had a gene which could be identified as the "cause" of his autism, or indeed if a child has a condition like haemophilia I think they may have been more use and better able to give us an more accurate idea of whether a child would have XXXX.

Thinking of you too, sounds like this admission will be of benefit to him in the long term. I imagine the team have been through similar before with other children, if this is common for them to send children home at christmas so have they suggested any other way that might make the return smoother? X <'>

thanks for explaining, haven't heard of it before.

Hi, what is a quoit? If the child is a runner because they just like running then I use the distraction technique, try and get them involved in what you may be doing: helping you by pushing buggy, carrying a bag or something. Also keep talking to them to try and keep their interest, and praise them a lot whenever they are walking with you/ next to you and holding your hand. Sometimes stickers or some other motivator may also help reinforce the message (I prefer the praise its cheaper but I recognise some children do not always respond to it), but it does take time to sink in, you have to be patient and persistent and there may still be occasional slips (for my youngewr son its if another child we are walking with runs off that he will also try and do the same). The combination of doing this and getting him to hold my finger, or just praising him for standing near me has improved things a lot and its a lot less stressful walking to school etc. I have to say though there have been times when all have failed and I have just had to hold his hand whether he likes it or not.

My son did not like me to hold his hand, what worked was to get him to take hold of my finger (therefore he is in control of the pressure). I tried to hold his hand then if/ when he protested I just gave him the option to hold my finger instead and that way he had a choice to make and he would generally hold my finger and walk with me. Another thing which a school teacher/ earlybird tutor had used with a child (with as ASD) who would not hold his parents hand was to use a card that he held as a signal that he should be holding hands (not sure what it was of, if indeed there was a picture on it) and the staff in school would get him to hold hands with them while he was holding the card, and after a while they got him to use the card and hold his parents hand too. This worked for them, so maybe worth a try. (or maybe they could hold some other toy or object to indicate that they should be holding hands when they are given/ are holding it?)

another link to info I found on an older thread on the forum: http://www.patient.co.uk/doctor/Mental-Capacity-Act.htm

Disability Living Allowance reform – public consultation This consultation seeks your views on the Government‘s proposals to replace Disability Living Allowance (DLA) with a new benefit – Personal Independence Payment. The Personal Independence Payment will continue to be a non...-means tested, extra costs benefit. It will help disabled people remove the barriers they face to leading full and independent lives. This consultation asks for views to inform our policy for reforming DLA and introducing a new objective assessment. The consultation applies to England, Wales and Scotland. The consultation is aimed primarily at disability organisations and disabled people, but we would like to hear from anybody who is interested. (the above info. is taken from the website) http://www.dwp.gov.uk/consultations/2010/dla-reform.shtml

Sorry to hear you had an accident, I hope that the garage keep their promise and glad you and the other party are okay. I also hope it doesnt keep you awake all night as well. Its not always an easy thing to put unwanted thoughts out of your head though is it... Take care

I am trying to say (if I have read your post correctly as well ) that I agree with what you are saying, and if you read the report the comments from families and the people in it who are used as case studies have a lot in common with your experiences. Issues raised in the report include Professionals working in the Child and Adolescent Mental Health Services (CAMHS) are not understanding of autism spectrum conditions, which can lead to misdiagnosis(see page 13,14, 15 of the PDF file and page 18 to 21) some professionals are just prescribing medication and no other treatment (see case studies on page 13 and 23 of the PDF file) there are often long waiting times for an appointment, and then when treatment is began it may be ineffective and/ or for short periods of treatment then the child is discharged regardless, only to have to be re refered and go through the long wait if another crisis arises or the treatment has not worked (see page 9 and 24 of the PDF file) And I also agree that the mental health services for adults with ASD needs to be improved. Hope this helps!

http://www.newcastle.gov.uk/core.nsf/a/mentalcapacityact

Sorry to hear that you are leaving the forum, I am sure that you have also helped others on here as well as finding support for yourself. I hope you find lots of fun/ relaxing things to do X

wow thanks for this, its a really good way to remember. I am going to save the link to my favourites as I am sure there are others I know who will benefit too!

Great news about DLA and good luck for the statement process too, very pleased for you

I asked him about his writing today,and why he writes particular letters as capitals. He said that he always writes B and D as capitals as when he writes them as small letters he mixes them up as he cant remember which way to write them..... not sure about A and R though, these are two others he seems to mostly write as capitals.. Thanks all for your responses. Still not sure of date of meetings, schools have been closed all week, not sure about what will happen next week so will let you know what they say at school.

Hi, I am sure that most people have on here received reactions like you describe "oh every child does that" "they all go through a biting stage, its normal" are some of the ones I have experienced. Even the people who are close dont always get it. My sister in law looked after my eldest for a time when he was about 18mths and they did not seem to understand how hard it could be till he stopped at their house when he was about 3 and he ran off because they wanted to dress him in his cousins clothes as he had nothing else to wear, and then he threw a car at the cousins head because he was not driving the car the right way/ saying the right things (he was VERY controlling in play situations). I think then she realised he was a bit different to your usual child. I am not saying this in a malicious way because unless you live with someone you cant always appreciate the difficulties they have. What has helped me is going to support groups and making friends with people who also have children with ASD at school (there are quite a few surprisingly and we actually last year set up groups in the cluster of schools in our area to make links with other parents of children with ASD and this has been a success, and one has been set up in a nearby town as well and we can attend meetings at any school in either place!). They will be able to relate to the little things that can cause you/your child so much frustration but seem so insignificant to those who dont live with or care for someone with autism or Asperger Syndrome. You can also share information that is local and therefore more relevant to you (i.e. best or most understanding after school groups, nurseries, good schools and how they help kids with autism) Take care X

The things you have thought about as potential issues/ things to consider are, in my opinion so thoughtful and all the things you wish every teacher would think about when teaching your child with an autistic spectrum condition. If I were in your position I would talk to the teacher you are observing to see what they think about the points you have raised (they are already teaching him, is that right?), and also I would talk to the SEN team who may be able to give you some information and arrange a meeting with the boy if you still think its necessary. The SEN team may also know how involved or approachable the parents will be, so they may be able to give you an idea about whether it is worth contacting them or not. I for sure would be pleased to meet with a teacher like you to discuss my childs needs in the classroom! p.s. are the IEP targets in your opinion S.M.A.R.T.? (for anyone not seeing this term before it means :specific, measurable, achievable, relevant and time related) I mean how do you measure a generic unspecific target like "continue to develop social skills?"

Congratulations! very pleased for you

Also this link to the NAS site, and information about understanding behaviour (you can choose a link to a particular topic, for example challenging behaviour or sleep via this page)could also be of use to you in helping to understand why things might be an issue for your child. http://www.autism.org.uk/living-with-autism/understanding-behaviour.aspx

You might find reading this useful. http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx you/ the school may find some of the following approaches/ tips helpful to try if she is not responding to the usual strategies applied for a child with ASD/Asperger Syndrome (regardless of her diagnosis - its worth a try): http://www.pdacontact.org.uk/noframes/guidelines.shtml Would perhaps be looking for another school, even though it working for your other two they dont seem to be very understanding of your youngests personality and character (and needs) Good luck X

a lot of what you talk about/ describe is is the report/ case studies. i.e. professionals who dont understand autism so may not even try, will misunderstand behaviours and confuse some things that are part of AS with something else - i.e. it explains how a professional would be able to look at the individual and recognise when it is an obsession/ comforting action or part of something more complex like OCD. Also about only using meds and not dealing with or offering other support. Long waiting times to access service/ having to go out of area. I agree adult issues are also ignored, and that is something which needs to also be addressed.

Whatever a child's diagnosis there are a lot of children with ADHD/ ASD who could fit the profile of an "explosive child" - certainly some of the behaviours you describe may fit that. I found it useful when my elder child was a similar age to your boy and def. showed a lot of challenging behaviour. Here are some (possibly!)useful links to information for you or anyone else that may be useful An excellent book called " The Explosive Child" by Ross W Greene has been recommended by many (I have it and it is very interesting - you can look inside the book and read a bit of the text if you look at the book on the online store AmXXXX as well) http://books.google.co.uk/books?id=sdwsPFJdKcEC&dq=what+is+an+explosive+child&source=bl&ots=JkUHnc1-fn&sig=cpXOkCfiSgj4TxHXYmdoPk7XVAw&hl=en&ei=NLz2TL_mN8iKhQfmnqHABQ&sa=X&oi=book_result&ct=result&resnum=4&ved=0CCkQ6AEwAzgK Below are some more information links about explosive children, including some useful links to tools you can use to look at your childs behaviour and tips to help manage or deal with it. http://www.achangeinthinking.com/PDF/inflexibleexplosivechildren0807.pdf (this has some good tips at the end) http://thinkkids.org/parents/ http://thinkkids.org/docs/TSI%20brief%2010-09.pdf this explains a bit more about the clinic who developed the approach (where Ross Green worked) Take care X

hi I emailed school about these concerns, and other concerns relating to his mental health, anxiety etc (which will impact on his learning too) as I thought it might be clearer, and give them time to prepare. They responded quickly in relation to other concerns and we are to discuss the educational things at meeting when rearranged. They want me to get him to CAMHS and also they getting ed psych and autism comm. team involved. with regards to a Clinical Neuropsychologist assessment, where and how can I get one of them? Will I have to pay to go private? I live in South Yorkshire. Thanks everyone for your help. X

Really pleased for him (and you!) what an achievement.X

would recommend anyone on here to read the NAS "you need to know" campaign report, and the parent and carers guide that can be accessed as pdf files from following link: http://www.autism.org.uk/get-involved/campaign-for-change/our-campaigns/you-need-to-know/resources.aspx you can also order hard copies from NAS Both are really interesting and informative. They campaign report has real life case studies and examples of good practice across the uk, and it opens your eyes. So many times you hear "its part of autism deal with it" autism and mental health issues can be separated and help can be given for issues like anxiety, if you have a professional who knows and understands autism spectrum conditions. The parent booklet has information and tips to help your child. There is also a recommended reading list that can be downloaded about issues relating to mental health. We are doing a local campaign and at the launch meeting I picked up a campaign pack. I am so glad I took the time to read it :thumbs:

meeting cancelled. school closed due to snow....