I'm new - need advice, am lost!

[dontjudgehim]

Hi all,

 

I am sure you have ready hundreds of postrs like this but I really need to blurt this out.

 

My 7 yr old son has has behavioural difficulties since being a toddler. We as parents have been aware that he is "different" from other kids for all of this time but the teachers at his schools have, up until now, let us believe that there really isnt a problems and it will pass. His behaviour includes over activity, often very angry and unabe to see reason, An inability to focus and concentrate, poor social skills, very clumsy, he also has an obsession with licking his fingers and wetting his toes as they feel dry all of th time. He is above average for his school age in terms of numeracy and literacy. He is often getting into trouble at school for lashing out.

 

A month ago his teacher pulled us aside to talk about his behaviour and suggested we go to our GP and have hinm referred for an assessment. Theey mentioned Aspergers and even bi-polar as possibilities which terrified us. I took him to the doctor and we are now waiting until July 13th for hi8s first appointment. My wife and I are depserate and dont know what to do. We have a 9 yr old daughter who is angelic so we think, can it be us?

 

This stae of flux we are now in is causing us great stress as we dont know whether it is us beinf bad parents or if he has a condition, what can we do! We are told the assessment process could take up to 6 months.

 

Since the first meeting with the GP, he behaviour has got worse. His finger licking is really bad, his anger spells are awful and he is getting into more trouble at school. Just yesterday the teacher trols us that he now has to sit on a table on his own in class. Surely that will make it worse!

 

Please, any advice would be gratefully recieved.

 

A loving dad.

[bid]

Welcome to the forum

 

The period when you know something isn't 'right', but you're waiting for appointments, etc, is really awful <'>

 

There's lots of info and advice on the forum, and plenty of empathy too.

 

Bid

[smiley1590]

the signs you have noticed sounds like could be AS unable to focus and concentrate has ADHD been looked into as possiblity with behavioural difficulties anger is probably frustration bi-polar disorder very strog official diagnosis for your son's age do you know why they pointing towards this? as AS can lead to up and down moods swings and often is like bipolar with struggling to cope and control emotions like anger above average for his age in ability ,poor social skills,cluminess,obsession with licking his toes and fingers all add to AS

 

isolatating will fuel the anger,agression,obessesion, i was like this at school common for AS children have this happen at school as teachers don't understand and 'naturally' think we will grow out of this condition or it will fizzle out which you may now know isn't possible i feel it unfair treatment to seperate your son this just make feel more different and low self-esteem/confidence

 

you not bad parents most parents without diagnosis can feel this way as blame themsleves with guilt anger sadness because the waiting for assessment so long play on your mind everyday you living without one! i would go back to GP and explain the personal situation with behaviour patterns are increasingly worse try speed up the referal as feels like could reach 'crisis point' if havn't already!

 

you're doing the right thing even though feels scary,frightening etc by gettting asessment step forward!

 

good luck with everything

take care

 

[dontjudgehim]

Many thanks Smiley, it is so nice to know that we are not alone. I honestly dont know why they mentioned bi-polar, I guess its just lack of knowledge??

 

We really dont know what is happening with our son at the moment and I explanied to my wife that it feels like he is changing every day. It upsets me greatly as I am feeling so guilty for what his life might be like in the future. I feel so so terribly sorry for him as he is such a loving boy and I love him so so much. How can I make it better? What can i do? nothing seems to be the answer right now which is like putting a dagger through my heart. A dad should be able to make things better and I cant.

 

I just hope we get the help we need soon and I sill regularly be on this site.

 

Thanks again

 

 

 

[dana]

Hello and welcome to the forum.

Don't think too much about future. Nobody knows what it will bring.Take every day as it comes.

It is NOT your fault for your son's problems.

This forum is a great place full of friendly people. You will find a plenty of good advise here.

My son (10) has been just recently refered to a poediatrician . I know how you feel.

 

Danaxxx

[dontjudgehim]

I should also add that he is getting himself a bad reputation at school amongst the other kids as being the naughty boy who is a bit weird. My son is so upset by this and he tells us he doesnt want to go anymore as the other children tease him. The teachers do their best but they are at end end of their knowledge line.

 

All in all, very lost and confused and upset.

 

 

[Gavin]

Hello

 

Having attended a meeting yesterday where it was decided that my six year old son will not be returning to his infant school following his latest exclusion, I do know how you feel. He is due to move to Junior School in September but at the moment it is completely up in the air. We have asked for Statutory Assessment but this takes six months after they decide whether or not to do the assessment, so a statement will certainly not be in place for Autumn term.

 

My son does have a diagnosis of Asperger Syndrome. I do have a bit of advice based on our experiences, which you can use or not as you wish.

 

Be proactive in ensuring that all the relevant professionals are alerted and that they talk to each other. Don't assume anything. Build up a file.

 

I would say don't wait for a diagnosis to start putting strategies in place at home / school that can help your son to cope. A detailed visual timetable on the kitchen wall has been a huge help to us. Ideally if you can find someone (ask school / LA / local autistic charities etc.) with the Widgit software and a laminator then you can make something really good. Or you can use clip art etc. If you want I can send you a picture of our setup.

 

If you use any behaviour management strategies, keep them direct and extremely simple, target one thing at a time and be consistent.

 

As soon as you can (probably when you have a diagnosis), do get on the NAS Earlybird+ programme if it is available in your area. We are doing it now and it is helping us enormously.

 

Make sure you understand the whole School Action / School Action Plus / Statement progression and remember that you can ask for a Statutory Assessment yourselves by writing to the LEA. This takes a long time so don't leave it too long if he is failing under SA+. Do look at NAS / IPSEA / ACE websites etc. for advice.

 

Don't forget that all this will have a profound effect on your daughter and that you may all need to seek respite, whether this is from extended family or services such as Crossroads. Children's Services may be able to help / pay for help once you have a diagnosis. You may also want to consider applying for Disability Living Allowance for your son once you have a diagnosis.

 

I am sure that you will also find lots of good information and guidance by asking or browsing past messages on this forum.

 

 

All the best

 

Gavin:)

[dontjudgehim]

Many thanks for your reply Gavin. Very helpful indeed.

 

I will look through all of the sites you recommend and also contact the local EA to see how I can get things moving quicker.

 

I am so glad I found this site.

 

Phew!

 

 

 

 

[dontjudgehim]

Hello

 

Having attended a meeting yesterday where it was decided that my six year old son will not be returning to his infant school following his latest exclusion, I do know how you feel. He is due to move to Junior School in September but at the moment it is completely up in the air. We have asked for Statutory Assessment but this takes six months after they decide whether or not to do the assessment, so a statement will certainly not be in place for Autumn term.

 

My son does have a diagnosis of Asperger Syndrome. I do have a bit of advice based on our experiences, which you can use or not as you wish.

 

Be proactive in ensuring that all the relevant professionals are alerted and that they talk to each other. Don't assume anything. Build up a file.

 

I would say don't wait for a diagnosis to start putting strategies in place at home / school that can help your son to cope. A detailed visual timetable on the kitchen wall has been a huge help to us. Ideally if you can find someone (ask school / LA / local autistic charities etc.) with the Widgit software and a laminator then you can make something really good. Or you can use clip art etc. If you want I can send you a picture of our setup.

 

If you use any behaviour management strategies, keep them direct and extremely simple, target one thing at a time and be consistent.

 

As soon as you can (probably when you have a diagnosis), do get on the NAS Earlybird+ programme if it is available in your area. We are doing it now and it is helping us enormously.

 

Make sure you understand the whole School Action / School Action Plus / Statement progression and remember that you can ask for a Statutory Assessment yourselves by writing to the LEA. This takes a long time so don't leave it too long if he is failing under SA+. Do look at NAS / IPSEA / ACE websites etc. for advice.

 

Don't forget that all this will have a profound effect on your daughter and that you may all need to seek respite, whether this is from extended family or services such as Crossroads. Children's Services may be able to help / pay for help once you have a diagnosis. You may also want to consider applying for Disability Living Allowance for your son once you have a diagnosis.

 

I am sure that you will also find lots of good information and guidance by asking or browsing past messages on this forum.

 

 

All the best

 

Gavin:)

 

[dontjudgehim]

it seems so unfair that your child is beeing excluded instead of helped - just remember that many very sucessful people have these disorders and excell in spite or because of them . having loving support must make all the difference - hang on in there <'>

[lynne]

 

 

Hi dont juge him,

 

 

Don't take the diagnosis off the teacher as they are not qualified to give a diagnosis and a diagnosis will cover all areas from communication, school, home, past medical history, social and play difficulties. How the child perfoms in different setting. Or when the child is in small group setting or a one to one.

 

However, asking for a referral to CAMHS is essential. You could also ask the teacher who gave you a pre diagnosis to request the ASD team or communication team (Each LEA have a different name for the team) to come in and observe your child and give advice. They do not need to be diagnosed for the team to visit.

 

 

Alot of ASD children are very stressed at the moment. Exams, change in routine, plays and sports days all cause our children confusion and increased anxiety hence this may be the reason why your child has deteriated. We have just identified 2 days that are coming up which are causing my child anxiety. One is a day where his class have to perform a play and the other is the sports day. So on these days I will keep him at home. My son is also off today just simply because he is so tired.

 

Children with ASD and aspergers very so immensly so the diagnosis can not be made on one observation.

 

The other thing you could do is start to request a statement. This means you write to the LEA requesting a statement which identifies what problems your child has and how the LEA will support your child in order for him to access the curriculum.

 

As a previous proster had said the statementing process also takes 6 months to complete. Yet again because they are preparing evidence getting views etc to see if your child does need support.

 

Just remember your son also has good qualities and the problems that are arising at school are not just because your son is behaving badly. Its the situation is not being handled correctly or your child is being placed in a situaton which he can not cope with.

 

 

The naughty behaviour is normally the childs way of taking control of the situation to stop things happening. I hope this makes sense.

[loulou]

Hi,

 

Welcome to the forum. I would just like to say that your son is very lucky to have a Dad like you <'> .

 

Having read your post, i would agree with lynne that your son's behaviour has probably deteriorated as he is stressed. If he is being tormented by other children, this will most definately cause him to lash out. Thank goodness the holidays are coming up. You may find for the first few days his behaviour is pretty bad , but then hopefully he'll feel much less anxious and settle down.

 

I have been a member on this forum for about 5 years and it has helped me tremendously through some really hard times. Now my son is nearly 11 and he is in a specialist residential school and is beginning to flourish.

 

Take care,

 

Loulou xx

[Sooze2]

First of all have some of these <'> <'> <'> <'>

 

The way you describe your son is how my boy was up untill very recently. Try and let him have some space when he's angry so he can calm down, tell him you will talk when he is calm. I always listened and acted on what he was angry about at school because he needed to have someone explaining that he was angry because of this....... and gradually the teachers learned that he wasn't just being difficult but either didn't understand what they wanted or he just wasn't aware of what he was being told off for eg, humming or chair rocking - he didn't know he was doing it so was angry about being told off etc.

Your school are talking to you so that is a great plus. Is he going up to year 3 next term? That was the turning point for us because at your sons age he became totally off the wall and we didn't know what to do with him and he didn't know what to do with him self!

 

My son's thing is sniffing everything including his hands all the time, nose picking constantly and biting nails. I had to learn to stop nagging him about these things because they told me I was making him more aware of it and more anxious, it has improved a bit since then.

 

I would say that the one thing that helped us enormousely (spelling?) was keeping a diary each day or when his behaviour is difficult or just odd, someone on here suggested that to me and it really worked because that has been given to CHAMS, his consultant - once we reached her, and even to the LEA towards his statement. Also tell the school you want Autism Outreach (I think they are sometimes called the Communication Interaction Team) to go in and observe him, I was told they don't usually go in without a diagnosis but since he was getting so unmanageable in class they agreed and gave school stratagies on how to cope with him and wrote a report which again went to the consultant and the LEA.

 

Also has an Educational Psychologist seem him at school? If you can get all these people in to see him the ball will be well and truly rolling before you see anyone at CHAMS and they will probably want to see reports from these people so it may speed things up for you a wee bit.

 

Parents in Partnership helped me a lot, we have one in school but if you don;t have one they can be found by looking them up in the internet in your area, they know all the ins and outs of the system and can make appointments for you to see all the right people. They should also be able to give you details of support groups in your area if there are any.

 

Look at his smiley baby pictures together when you (and he) are feeling low and remember how much you love him and know he loves you too, he is probably feeling bit lost right now. One of you can spend time with your daughter doing what she likes doing and maybe the other take your boy to the woods for a bike ride and let him get really really muddy and go very fast, let him think he is rebeling saying Mum will tell us off for being so dirty when we get home in a fun way - let him think you and he are a team and a bit naughty and have fun so when he's at school weekends have good memories and he can look forward to more even if it's a nighmare at the time you are doing it he will be very glad you did. Live for now and finding his smile even if your wife tells you off for leading him astray, Ive found that my "lads" are now a little gang and those short hours on the bikes or fishing in the rain make their lives so much better even if they don't happen very often. The main thing they do is going off somewhere quiet, fishing, on the bikes, tinkering with a recently bought shell of a car that will never work but will have very shiney wheels, this time of year is hard for him so when he is very stressed he will polish the car with Dad and go to bed very late but will have forgotten some of his worries into the bargain.

 

Your boy is very lucky to have a caring Dad like you

[Sally44]

Hi and Welcome,

Sounds like your son is a very bright boy. He appears aware that he is struggling and is being teased by others. That is a positive - but is also a need that school and SALT have to address otherwise his self esteem will plunge. There is lots school and SALT can do regarding social communication and play skills. Lots they can do with dinnertime clubs, circle of friends, social skills group etc.

Nothing much else to add that hasn't already been said.

This stage really sucks. I remember being at a Help Programme run by the NAS prior to getting my son's diagnosis. During a break I went to the loo and looked at myself in the mirror and I looked like someone on the verge of something serious!! It is stressful. But you will get through it, and you will learn alot and things will get better.

Just be an advocate for your son and always follow things through to ensure they happen. And get on any NAS course ie. Help Programme or SEN course.