New to forum...Hello there

[sawjd]

Hello there,

 

my name is sandra and we (me and other half) have two boys who are both on the autistic spectrum. Our seven year old has been diagnosed within the last year.

 

I thought i would give you a bit of a personal profile. Firstly i have dyspraxia/dyslexia, OH (other half) has multiple schlerosis which is relapse remitting ms. Just wanted to say he walks with a stick and is not in a wheelchair.

 

The eldest boy (18) was diagnosed back in 1999. I had a horrendous hell of a time with the first boy as no one believed what was going on and i had to tape record conversations with my son to prove his level of understanding and the arguements and abuse i got from him for instance things like, 'why i was going to safeways first instead of woolworths when i said i was going to woolworths first'. Things like shop window dummies would freak him out and he would walk well out of the way if we were approaching them. Even the artist dummies would make him cry and make him physically scared. Anyway eldest boys events were traumatic for me and the thought of going through the system again with our little one brings back sad memories.

 

I have been thinking though, there is no point dwelling on these things and i have to find some strength to fight again for our little one. The trouble is this time the support at home is not there. OH parents don't want to believe little ones problems and both my parents i lost to cancer back in 2000. (i looked after mum weekends at home before she died) Its been rough, really rough the last ten years.

 

Don't want support from social workers, i hope that maybe talking to people like yourselves who know and understand how difficult it is, is more valuable to me and because of the experience of dealing with authorities i could be of some assistance. I have waited ages (i am not a technically minded person)for a website like this with a forum as i found the NAS parent to parent line was limited. I found myself being on the ms society website has been and still is a brilliant forum as they don't just talk about ms, they talk about how the disability affects their daily lives and also whats in the news and share jokes. I have not scrolled down and had a proper look at this site but hope to find something similar but obviously mainly support for both what our little boy is going through.

 

So far, our son has sensory integration problems, so just quickly i will run through a few things, he can't stand crisps, hates jumpers, goes through sessions of taking his trousers off as he sweats a lot, does not like to feel tacky i think even slightly. He can't stand the sound of the piano but at the same time he has possible glue ear again. Can't stand fluff in between his toes from socks. Likes the feeling of being stroked (particularly with something like a travelcard and stroked up and down the arm.(when he is anxious at times ie like being on a train). His main thing though is dressing up and cannot stand to dress up in fancy dress.

 

These past few months (Christmas nativity in particular) he has been refusing to go in to school when they have a dressing up day, this can be for a book day (dress up as your favourite character) or play for school or a event for assembly. This is causing so much anxiety for him and we have tears and clinging to bannisters and throwing of things from him when the school have these occasions.

 

The school is wanting to encourage him to take part and he doesn't want to. The school think i should encourage him to do so.We have tried outside the school when he has been invited to attend parties with fancy dress,our son says i will go but i won't dress up. The school have said recently i should tell him that he does not have to dress up. They don't know that even by telling him (which i have anyway) he won't believe me. It has to come from them. The logic he has has started to show itself more now and his inflexible thinking. The school don't seem to believe its autism and do not understand.

 

Our son has problems in art, litracy and geography. It was also in music as the noise of the piano 'gave him a headache' but we mentioned this and they have put our son to the back of the class, so now no problem,he goes in on that particular day skipping. He struggles to write any short stories but is a bit of a genius (to me anyway)in maths and can work with computers and mobile phones straight away.

 

Last night though at parents evening the teacher said he had been fighting at play times and he struggles with being in peoples faces and not knowing when enough is enough and not understanding when other children are getting upset. We are thinking of changing schools, but this school that he attends brought his initial difficulty to our attention in the first place, can't understand what seems to me to be a change of heart from them. Do i get them to log incidents, what do i do now, its been so long since i have done this. I know its not little ones fault but i have to fight for him just like i did our first son (he is from a different relationship) i thought this would be different this time with OH but some days it feels like i am on my own again and its no one fault, sorry if this email sounds like i am angry and sad but i think it a case of going through the emotions. I am grateful i have two lovely boys and i love them no matter what but just angry that its so damn hard to make people and authorities understand.

 

Thank you for reading such a long email. Love sandra

Just one more thing, they are wanting to do a CAFs referal but i am not keen as Haringey Social Services may be notified and in the past they have given not help but hassle to me. Given all the press in the last two years, i am not keen on having anything to do with them, they did not want to help after the eldest child was diagnosed.

[mygifts1306]

hi, i have just wrote a message but lost it will write it in word.

[mygifts1306]

hi there, Jax here, sorry to hear about your parents passing, it must be difficult. I dont always respond to posts as I dont want to come across as patronising in any way, but what i will do and give you instances in my own experiences and let you know how we dealt with it. Like you my son is 7, and goes to a catholic school. Unlike you I do not have any older child he is the oldest, like you I have struggled greatly in the battle with the school, When I had children because I did not know anyone with Autism I expected that my child will like school and make friends along the way, however this did not happen, instead my son started school at 4 and a half, he went from year one to year 2 puzzling all his teachers, and one of the cracking statement we heard about him was " they have never seen a child like him", he was " full on nonsense". This is just to give you a little glimpse of how it was for me, the head told us that he thought he had ADHD and ODD, he was very hyperactive, hitting and pushing all the time and always doing the opposite, this was really bad, i tried to devise ways for the school to deal with him for intance the use of a clock so he can finish his work. He struggles with math and his strength is in reading.

 

Now gettin back to your specific questions, you asked if it will be a good idea to asked for a kind of log, i would say yes, as they might be able to identify the triggers. About personal space , my son struggles with this and finds it difficult when they are sitting at the carpet to listen to the story, he is often encroaching in other children spaces, we have maintained he can be close to family that is mum and dad but he should try and keep a fair distance, i think he struggles with this, We have social stories to help and have to use the right language with them.

 

I am not sure how social services will be involved maybe i dont understand. I live in scotland and sometimes i dont understant the abbreviations used here.

About moving school, you will have to speak to hubby about it and then come up with a concrete descision, then go up to the meeting with the united front, you can tell from how his teacher and head of year are speakin about him if they have his interests at heart, I home schooled ds for a while it was very exhausting and its very isolating and at the time DS was only 1. WE stuck to the same school and things have improved greately. he loves his 3rd year teacher.

 

WE still have problem but we are taking each day as it comes, currently he is lying a lot and taking things that do not belong to him. It will never be a plain sailing we realise but we just have to count our blessings and look at the other positive thing. It is really humbling being on this site as you can see how others are affected by autism, yes autism is fascinating but i wish it did not happen to humans.

 

take care now and hope i have been helpfull

 

kind regards

 

jax

 

 

 

[Kathryn]

Hi Sandra and welcome.

 

It must be tough feeling that you have to go throught the same battle again - and without family support this time. A CAF may help get various services talking to each other, but it doesn't oblige any service to actually provide anything. If your son needs extra help at school, asking for a statutory assessment may be a more effective way to go.

 

K x

[sawjd]

hi there, Jax here, sorry to hear about your parents passing, it must be difficult. I dont always respond to posts as I dont want to come across as patronising in any way, but what i will do and give you instances in my own experiences and let you know how we dealt with it. Like you my son is 7, and goes to a catholic school. Unlike you I do not have any older child he is the oldest, like you I have struggled greatly in the battle with the school, When I had children because I did not know anyone with Autism I expected that my child will like school and make friends along the way, however this did not happen, instead my son started school at 4 and a half, he went from year one to year 2 puzzling all his teachers, and one of the cracking statement we heard about him was " they have never seen a child like him", he was " full on nonsense". This is just to give you a little glimpse of how it was for me, the head told us that he thought he had ADHD and ODD, he was very hyperactive, hitting and pushing all the time and always doing the opposite, this was really bad, i tried to devise ways for the school to deal with him for intance the use of a clock so he can finish his work. He struggles with math and his strength is in reading.

 

Now gettin back to your specific questions, you asked if it will be a good idea to asked for a kind of log, i would say yes, as they might be able to identify the triggers. About personal space , my son struggles with this and finds it difficult when they are sitting at the carpet to listen to the story, he is often encroaching in other children spaces, we have maintained he can be close to family that is mum and dad but he should try and keep a fair distance, i think he struggles with this, We have social stories to help and have to use the right language with them.

 

I am not sure how social services will be involved maybe i dont understand. I live in scotland and sometimes i dont understant the abbreviations used here.

About moving school, you will have to speak to hubby about it and then come up with a concrete descision, then go up to the meeting with the united front, you can tell from how his teacher and head of year are speakin about him if they have his interests at heart, I home schooled ds for a while it was very exhausting and its very isolating and at the time DS was only 1. WE stuck to the same school and things have improved greately. he loves his 3rd year teacher.

 

WE still have problem but we are taking each day as it comes, currently he is lying a lot and taking things that do not belong to him. It will never be a plain sailing we realise but we just have to count our blessings and look at the other positive thing. It is really humbling being on this site as you can see how others are affected by autism, yes autism is fascinating but i wish it did not happen to humans.

 

take care now and hope i have been helpfull

 

kind regards

 

jax

 

[sawjd]

Hello Jax,

 

Thanks for the post. Does your school have a SENCO (special educational needs officer). Its good that your sons school were so open and honest enough to feel that they could comment. Our first son and his problems were not picked up despite my pleas.

 

I am reluctant to go for what they call a CAFS referal. It is to do with informing all authorities and that they talk to one another and share info about your child possibly without you knowing. Your doctor and child mental health team and other professionals all get involved. Some say its a better way to handle things, but this is Haringey we are talking about, things they say have improved since the baby p case but they have a long way to go still.

 

Me and OH had talked about changing schools. Don't think they do have his best interests at heart as they have implied i do not encourage him enough and i explained that we do encourage him and they think it my doing that he behaves the way he does. They are saying they do not have problems with him yet it is still an effort for him to get to do some work especially litracy and also he is pushing and shoving kids in the playground as he is not aware of other childrens space or boundaries yet the school have only just told us about a few incidents of this happening. If something had been said earlier then we could have sorted something, talked to our son instead of letting this go on, having said that we have tried to explain things before but its in his nature of this condition and his lack of understanding that makes him aggressive. The head teacher and myself have had a bit of a disagreement about the dressing up (fancy dress)and she thinks i should encourage him. To me its optional and should not be forced on to him. He does not feel left out as it does not bother him if he does not dress up.

 

Tonight he is refusing to go in tomorrow as he cannot do the work and i am due to meet someone from the autism team (links with schools in the area) to discuss strategies on how to get him to perservere.

 

Many thanks for taking time to reply.

 

Hope that things are going well for you child.

 

Best wishes sandra

[sawjd]

hello Jax,

 

Sorry i just re read the last paragraph and obvioulsy things are not going well. Has anyone other than school been offering any advice on his lying and stealing at all ?.

 

Are you being supported by your local authority enough ?. It must be difficult to cope with him doing this, how do other parents and children feel about him ?. I am getting the looks from parents all over again. The feeling of isolation we feel is diffiucult so moving to another school where they have a few more children on the spectrum might just be the thing where i could talk to other parents who are local and maybe he could make some friends.

 

best wishes

 

love sandra

[Sally44]

As school raised the issue. And you already have another sibling with an ASD. Then he should be referred for assessments. Where is he on the SEN graduated approach. Is he on school action, or school action plus? Does he have IEPs etc have any professionals been in to see him eg. SALT, EP, OT.?

Can you go via health instead ie. go to your GP and tell him your concerns and ask for a referal to the MDT that diagnosed your older child? When you see the paediatrician ask for a referal to OT. It takes a long time - we waited 2 years eventhough the diagnosis said sensory integration dysfunction. To help get things moving you could ask an independent OT to give you a programme to carry out at home with any relevent advice for school. After the initial set up cost you may only need termly reviews with the OT. But I know money will be scarse. There is always so much you could do if you won the lottery!

 

Also ask your LEA for the list of primary maintained, independent and approved schools. This list will tell you the specialism of each maintained school within your LEA. It will also list the independent and approved schools both inside and outside your area that your LEA does use. Your LEA may have a mixed mainstream enhanced resource for ASDs. If so you may want to consider moving them to that school. You maybe able to do that now just by moving him as a mainstream pupil and without mentioning ASDs - which would not be lying because although you suspect, you don't actually know if he is on the spectrum. Then ask for an assessment towards a statement once he has been there a short while. If he gets into the school as a mainstream pupil and then gets a Statement the LEA/school have to meet that. If you wait until he has a Statement and then ask for an Enhanced Resource placement at the same school, they may say that all the ER places have gone.

 

However if you appeal to tribunal the school can be forced to make another place. You may want to see how he does there in his primary years, and then consider going back to tribunal if at that time you have gathered evidence that he needs an independent or approved school that can meet his needs.

 

Keep all correspondence and letters. Always follow up relevant conversations and telecons with a follow up letter. You will be amazed how useful those letters are 4+ years down the line.

 

It sounds like you really have had a very stressful time. So look after yourselves. But as you know, no-one else is going to do this stuff for us. So take the marathon runner approach and methodically start working through it. It does take some time to get it right.

 

Oh ... and welcome to the forum.

 

[trekster]

Welcome i was diagnosed just before i left school.

[sawjd]

Hello Kathryn,

 

Thanks for the post. I have to do a parent referral and give that a go first and our doctor (who we had seen tonight) said she will support a letter to the education authority and support the schools request for 8 hours support. So we are going for a statutory assessment and just wait and see what they say. I spoke to someone from IPSEA who said that they can't refuse a assessment on the grounds that he has not gone via a CAFs referral. Doctor tonight said that its a part of a childs safety team in Haringey.

 

Its been a stressful few weeks, because our son has been refusing school on the days when they have to dress up. Its been odd days but now his logic is that because i cannot dress up then i don't go so if i cannot do a subject i don't go. We have told him this is not ok and that he has to go in. I have said he does not have to dress up but he does not believe me and then we have tears and tantrums and finger peeling off of banisters and i cannot stand him being upset so he has missed things like book day (where you have to come dressed up as your favourite book character). Assembly on one occasion where they did a mini play and he got so anxious he told us the night before he was not going in.

 

We have had to miss about just three days in the past three weeks or so. Parents evening they told us he has been more problems with his behaviour in the playground where he has been pushing and shoving people to the point of causing tears. He does not understand about peoples personal space and does not read peoples emotions so he never knows when to stop until its too late. At least he is not biting people and throwing chairs in the classroom like the eldest one did at his age.

 

Thanks for advice kathyrn, i wish i found and had access to this site sooner.

best wishes

 

love sandra

[sawjd]

Welcome i was diagnosed just before i left school.

 

Hello,

 

Thanks for the welcome.

 

I love cross stitching too. I do have trouble typing emails as i have dyslexic/dyspraxia.

 

Best wishes

 

sandra

[justine1]

Hi

I have read your post but have not read other responses so do forgive me if I repeat what someone else has said.Or questions already asked.

Firstly welcome to the forum <'>

 

My son is six and has a dx of Aspergers,he has alot of behaviour problems at school,had been excluded twice before christmas and is now on flexi schooling so finishes at 12,so far this is working for us and we are starting to get him back slowly to full time.

 

I think definetley you need to make sure they are logging every incident even small things like my son goes under the table alot or throws coats on the floor,they make note of these things.I also gave the teacher a diary and she or the TA would make note of his day incase I was unable to see them after school.

 

Is your son getting any help at all?My son attends nurture group even before his dx sometimes it helps other times it doesnt but its worth trying.

 

With regards to the CAF,I totally get why you would be concerned I am not in the same borough but after I split from my partner two years ago SS got involved and it was hell as they didnt give me the help I needed and prevented my children from seeing their father for 7 months,not even at a contact centre!I agreed to a CAF in december for my son as the school said its not to get SS involved its to get multi agency input(ed physch and autism outreach) so I was fine with that.Though after the Ed pysch came she didnt even know the CAF was done and said it should be done as my son witnessed violence,which was untrue,so I got her to withdraw this statement she blamed the school the school blamed her for this mis information Anyway I would say its worthwhile doing the CAF,hopefully it will get the ball rolling for your son to get the help he needs.

 

 

[trekster]

Hello,

 

Thanks for the welcome.

 

I love cross stitching too. I do have trouble typing emails as i have dyslexic/dyspraxia.

 

Best wishes

 

sandra

 

Great let me know if you are interested in swapping for or buying any mags.

ive got some charts as well that i dont need.