help and advice needed

[xjuliex]

hi all. my son is 4 years old. i have suspected he had problems since he was 2. all my concerns were wiped away by people saying he is young and give him time. he started school in september and his teachers think he has aspergers. after reading up on aspergers i realise it describes 100%. his teacher is going to get a 'sen' person to observe him and she said go from there! i am lost as to what to do next! how long does it take to diagnose? will he get one to one care at school? what help will i get? its breaking my heart having to run away from him every morning when i leave him at school knowing he isnt happy and hearing his screams! how can i help him?

some of the things he does is...

lines things up

obsessed with bowling. if a skittle gets knocked down by someone else he flies off the handle!

dosnt talk unless promted to!

limited speech.

wakes up to 10 times in the night demanding things like his bottle, blanket, hug. (still sleeps in my bed!)

refuses to wear different clothes so i have to buy 5 of the same items of clothing he will wear!

started lashing out at his 5 year old sister if she invades his space or his skittles/bowling!

fascinated by numbers. learnt to count before he could talk!

started making tic repeated sounds!

at school he screams most of the day and refuses to let go of his coat. when i pick him up from school i see him sitting on the carpet rocking backwards and forwards until he see's me then he runs out.

still uses the buggy as he has no awareness of danger and tires easily.

the list is endless..

[justine1]

Hi

 

Welcome to the group. I have four boys two have ASD. My 8 year old, Sam, was referred by the GP (after his 6th birthday) to a child development centre where he was assessed twice by a paediatrician. The assessments consisted of taking down history from when my son was born up to that point, they also got info from his school and then they did various puzzles and asked him questions. From start,when I saw the GP, to finish, when I received his full diagnosis/report, it took just over 3 mths.

 

My 5 1/2 year old, Dan, was seen by various other professionals first as my main concern was his eating. We got referred to a dietician before his 4th birthday who said it was behaviour related, she passed us on to CAMHS. They said they could not give a diagnosis and that they deal with mental health issues as his brother already had a diagnosis they referred us back to the development centre where Sam was diagnosed.

Dan's assessment was quite different he was seen by a multi disciplinary team, which was great as he was assessed on speech, behaviour and learning. I was sent a report about a month later that confirmed ASD. So with Dan the process took about 10 months.

 

The school/SEN cannot diagnose but they will be able to write reports about how your son is in school. Also if he does need 1:1 you will have to apply for a statutory assessment so that he can get a statement of special educational needs. This takes 26 weeks but its not straight forward as the LEA can decline this at any point. Sam was on IEP's and school action plus for almost a year before we applied for a stat assessment. When he started year 2 he ended up doing half days at school and had 1:1 but it still was not enough.

So your son's school need to start the ball rolling now really, he should be on IEP's and on school action and then move to school action plus, before you can get 1:1 for him.

 

Obviousley all the above varies according to where you live but I am sure others will post to give you an idea. Good luck in getting him help.

[kirky]

Hi Julie, Deep breaths in and out. You are not alone!! Firstly you should go to your doctor and ask for a referal to the local specialist for your son. It can take a few months to get an appointment but they will assess him and possible diagnose. If you say that you and his school suspect aspergers they should look carefully for that. It's basically, if he ticks enough boxes in the aspergers list he'll be diagnosed. It took only took 2 visits for my son to get diagnosed after i said i wanted him assessed for aspergers, but i had a great specialist.

It may be that your son just isn't ready for full time education (it definately sounds that way to me). but if his school has picked up on his aspergers then theres obviously some good teachers there. Work closely with them to organise a game plan, tell them what you think your son needs to help him and get them to call in an educational pscycologist and go from there. One step at a time.

Once/If he's diagnosed you can access all sorts of support groups in your community and also will be eligable for disability living allowance for your son, which is not means tested.

Good luck!!

Marie

[Kathryn]

Hi Julie

 

Welcome to the forum. I merged your topics together so you can see all replies together under Help and Advice.

 

Your son is still young enough to benefit from many years of additional support if he needs it, so it's good that school staff are taking action now and involving you as well.

 

Two important things to bear in mind:

 

As has been said above said, educational professionals cannot give a diagnosis of Asperger Syndrome, only a health professional such as a paediatrician, clinical psychologist or psychiatrist can do that. So you would need to get a referral to a child development centre, or similar, where usually a team of professionals would assess your son. The sooner this is started the better, as there is usually a waiting list and the assessment can take time and usually involves more than one visit: it appears that professionals often adopt a "wait and see" approach before giving a firm diagnosis, especially for young children.

 

The other thing is that your son doesn't need a diagnosis of anything before the school gives him any extra help: in fact they have a duty to support him if he is having greater difficulty than you would normally expect a child of his age to have, whether the problem is with his behaviour, reading and writing, communicating with others, or with any other aspect of his education. The school may be able to give him some extra 1-1 help straight away, or support him in a small group with other children, or even bring in a specialist teacher depending on what he needs. An Individual Education Plan (IEP) should be drawn up for him. This will enable the school and you to set targets for him to work towards, plan what extra help he will get to achieve these and to monitor his progress carefully. You may want to ask for a copy of the school Special Educational Needs policy and then after the observation (assuming it will happen soon)ask for a meeting with the SENCO and class teacher to discuss what happens next. The policy should set out what kind of extra help the school would normally provide at School Action and School Action Plus.

 

K x

Edited October 25, 2011 by Kathryn

[Beebee]

Hi Julie and welcome.

 

Pre-diagnosis is a very difficult time and can seem overwhelming.

I have two children myself, my eldest who is nearly 17 has Asperger's, so i can empathise with you. I remember clearly many years ago, where i thought that maybe my son was on the 'Spectrum' but i too was repeatedly told that he was young and probably just immature.!!

 

It is very positive that your son's school are 'setting the wheels in motion' and they will presumably organise for him to be assessed and then along with other professionals - start the ball rolling to get him an official diagnosis. This should then allow for a 'Statement of Special Need's and then funding for one - to - one support within school.

Obviously this can be a very long process but take some comfort from the fact that you have a helpful school/SENCO - which in my personal experience is definately half the battle.

 

Apart from having personal experience with my son, who i have to say is an articulate, kind young man (who im very proud of) i also work with children with Special Needs - specialising in Autism...so if there's any advice or help i can offer - or simply a listening ear then please feel free to message me.

Were only in Northampton, so quite close to you - MK..?

 

Bee

Edited October 26, 2011 by Beebee

[Pancakemaker]

Hi Julie,your boy sounds so much like my boy! Damien's 4, he's still in nap pies,speech delayed,gos nuts if a car is moved out of place in the lines he so carefully makes round the house,has to be the 1 who opens the door and puts the tv on etc,also has only been walking to school a few months,I used to have to take him in the buggy. But he's on reins now,as he runs off and lies in the road.once behind a reversing BMW.i took my son to Speech therapy and they referred me to the community paeds,he's now on the waiting list to be diagnosed with high functioning autism.try your Gp as well, and if you want a chat,message me ok?Emma.xx

[xjuliex]

hi again. thank you for your replies. how do i do a pm on here?

 

can you advise me on how to manage my son when he has a tantrum? he frequently attacks his 5 year old sister when she invades his space and no matter what i do he keeps doing it. is it possible to stop him lashing out at her? or do i have to supervise him all the time with her? will he learn to stop these attacks? how do you manage when your child goes in to one?

any hints and tips will be gratefully received.

also what are the best books that you can recommend for me?

thanks in advance for your help xxx

[justine1]

hi again. thank you for your replies. how do i do a pm on here?

 

can you advise me on how to manage my son when he has a tantrum? he frequently attacks his 5 year old sister when she invades his space and no matter what i do he keeps doing it. is it possible to stop him lashing out at her? or do i have to supervise him all the time with her? will he learn to stop these attacks? how do you manage when your child goes in to one?

any hints and tips will be gratefully received.

also what are the best books that you can recommend for me?

thanks in advance for your help xxx

Hi

 

To pm you click on the persons name,where they have commented,when you on their profile you click on send a message.

 

How have you been handling his tantrums in the past? ASD is not an excuse for negative behaviour and it will give his sister the wrong message if he does not get sanctioned for the behaviour when if she did the same she would do. I made this mistake,luckily I soon learnt the rules have to be the same for all four boys.

 

I have recently been given "good strips" from Sam's ASD unit. How they work is, you have a strip of card with the childs name on it it has two columns one saying good and one bad, under each there are five velcro squares, you then have five thumb signs with velcro.When the child does something good like giving his sister a compliment or just playing nicely he gets a thumbs up on the good column this will give him 5-10min of doing something he likes so maybe extra telly time.Then if he hurts his sister he loses telly time getting a thumbs down on the bad column. Give his sister one as well as I say same rules need to apply. I already had these rules in place however never had anything so visual and it works so well for Sam in school he loves it. If you don't have velcro etc you could use a small white board which you can get often for around £2 or less, you can then just draw a thumbs up or down in the columns. Also the times can vary depending on your own circumstances. In my case I often make it 15min cause Sam likes spongebob and each episode is 15min so either gains it or loses it.

 

If you can see he is getting angry or upset remove him from the room to somewhere quiet, leave him for a few minutes to calm down,make sure there is nothing for him to play with or break. The same applies for after he has hurt his sister, he needs to have time out, for me the naughty step has only worked with one of my four kids but you could still try it, if not take him to a room or corner where he can sit and do nothing for 4 minutes (longer if he seems to be angry still) after that he should apologise to his sister and then he loses time,show him he is getting a thumbs down and explain why that has happened.

 

Also a good idea is to write up a visual timetable for him because he is still young you can just use pictures and place them in the order in which he will do each thing,so when he wakes up if he has breakfast first put up a pic of cereal or a child eating breakfast. If he watches telly unrestricted start giving him and his sister time limits same goes for any consoles he may have. Split up the time so that he is not getting over stimualted maybe 30min of telly then have a play for 1 hour then eat,then another 30min telly, for his sister you can write up the samesort of timetable but include time.You can use egg timers so he knows how long he has got or with telly you can say when this is finished we will do X point to the timetable as you explain, 5min before the programme or playtime ends say that he has just a few minutes left so he is prepared for what is happening.

 

These things really work its taken me two years its not a quick fix and my older two have alot of arguments but we are getting there. Sam's school have also just suggested that to build Sam and Josh(my eldest) relationship they should spend 1:1 time maybe 30min every second day or what I have done is make it over the weekend as I already have a full schedule for both of them during the week so they are out of each others way. The time they spend can be playing a board game or drawing pictures. The aim is to get them to talk positively to each other, Josh can be quite mean to Sam I think its because they both like my attention both get jealous of each other and Josh has taken alot from bullies over the years cause of Sam. They also put a pasta piece in a jar everytime they say something nice or do something nice for each other when they jar is full they will get a treat like go out together,this way they working towards a goal and both getting a reward at the end,team work.

 

Everything is trial and error but most of what I have tried works because I have stuck to it made sure they always get consequence for bad behaviour and reward the good. If you have a day where you say I am to tired to do this and let things slide,even just one day,it can be a major set back and sometimes things will be worse than when you started. I have learnt the hard way. Good luck with it.