HELP!!!Are we getting the right support!!!!????

[justamom]

We attend sessions with a family councillor to help us with K and his AS are there any other professionals we should be seeking advise from????. any input would be appreciated no matter how small. Thanx Justamom

[phasmid]

Difficult to answer your question without knowing more to be honest, things such as; age, school, main issues you have etc. With a clearer picture of where you are and what you're getting I am sure we can help.

[OPooh]

What happened when you got the diagnosis? Who saw you to get it?

 

My son has had input from SALT, the educational psychologist etc too.....

 

Good luck with it anyway and hope you get all the help you deserve.

[hev]

ive never heard of SALT,how do they help?

[justamom]

Hi Phasmid,

 

Keegan is 12 has AS and is in Main Stream Schooling. We received a dx of mild aspergers a year ago and we were referred to our local (essex) family consultation unit where we see a family liason officer. We did see a phycatrist during the initial dx process but have not seen her since is that normal

 

Our main areas of concern are the tantrums - they seem to be getting worse - does it get worse with age/hormomes etc??? His temper is getting worse and he is a rather big boy. When in a temper its hard to calm him we just have to leave him alone to get over it himself and then he gets upset and cries about his behaviour. We just really need to know behaviour management.

 

When we are seen by the consultation unit its really a time for us to air our views and to let off a bit of steam no real stragties.

 

thanks justamom

[lainey]

i didn;t even know you could get support son got diagnosed 18 months ago and i was a case of its asd and out the door we went we had no support what so ever i even had to buy a book to see what asd was i only wish we had had some

[adamsmum]

lainey the same happened to me. we found out for ourselves. we get most of our support from contact a family

[oracle]

Our main areas of concern are the tantrums - they seem to be getting worse - does it get worse with age/hormomes etc??? His temper is getting worse and he is a rather big boy. When in a temper its hard to calm him we just have to leave him alone to get over it himself and then he gets upset and cries about his behaviour. We just really need to know behaviour management.

 

As the Mum of a Son of 18 with AS I would answer yes it certainly got worse for us during the early teen years. Right up until the age of 16 our son was a nightmare. The problem is that as everyone with AS is different there is no one method where behaviour is concerned that will work for all.

 

When the trip switch goes then everything else usually goes with it. What needs to happen is to identify what makes the switch trip. This can take a long time but it can be done. No one will know your son as well as you do - not even the proffesionals. If you can avoid a trigger point then you can sometimes avoid the melt down. However it helped us by having very clear rules about what is and what is not acceptable - even during a melt down. David needs to be alone after a meltdown because he finds it physically and emotionally exhausting. When he has calmed down then we discuss what happened and what triggered the meltdown. I think that a lot of parents with teens here would agree that the teen years can be very hard.

 

We received a dx of mild aspergers a year ago

 

There is no such thing as 'mild' AS, in my opinion. It's a bit like saying that someone is mildly pregnant - they either are or are not pregnant.

[lainey]

lainey the same happened to me. we found out for ourselves. we get most of our support from contact a family

adams mum that is why we got computer so we could go on internet so we could speak to other people isn't it terrible in this day and age to be treated like that it upsets me to think that there are people out there who are going to be just like us i wouldn;t wish it on my worst enemy lainey

[Glock]

Hi Phasmid,

 

You definately need support/guidance!

 

Our 13 year old son has temper tantrums which are becoming more frequent and more aggressive - he too is a large lad so when he hits out he damages things (including his younger sister) and he has now taken to hitting himself, head banging etc. It does not matter where we are, who is listening - if he looses his temper he goes for it regardless! he is extremely loud and inconsolable. From my experience, you are doing the best thing to give him time to cool down - the frustrating thing as a parent is that you cannot always then sit down and discuss why he has got angry or expect an apology for what has happened or for them to show any remorse as he probably does not feel it.

 

We have had professional support with our son since the age of 8 but we have had to fight all the way to get it. The regular sessions that our son has with the occupational therapist are invaluable for both of us as I have always sat in with him (my sons choice) so the input that he has had has been marvellous and quite honestly I do not know how we would manage him without it. If you can begin to understand how your son 'works' you will find it 'easier' to deal with the tempers and also to begin to know how to best support him. These professional people have a way of 'unpicking' your children and really getting down to the root of what is causing the frustration - sometimes it can be something totally obscure and to us totally insignificant but to them it is a huge problem but they have not got the ability to sit down and discuss it in a civil way.

 

I could go on for ages (sorry if I already have! ) but this is a subject very close to my heart.

 

I don't know where you are at with the 'system', but I would strongly advise that you find out whats available in your area and if you find a service that you think your son will benefit from - go for it big time. Our son was funded by the NHS to attend a private clinic for a year - miracles do happen!

[oracle]

These professional people have a way of 'unpicking' your children and really getting down to the root of what is causing the frustration - sometimes it can be something totally obscure and to us totally insignificant but to them it is a huge problem but they have not got the ability to sit down and discuss it in a civil way.

 

'Some' professionals may have a way of 'unpicking' our children but only those who really have a good knowledge and understanding of ASD. Before any professional tries to 'unpick' our children it is worth making sure that they have this knowledge and understanding.

 

As a parent whose son was 'unpicked' by a professional who did not have this knowledge and understanding and was left with a son on suicide watch then it really is a good idea to make sure about their credentials.

 

Carole

Edited January 22, 2006 by carole

[Glock]

'Some' professionals may have a way of 'unpicking' our children but only those who really have a good knowledge and understanding of ASD. Before any professional tries to 'unpick' our children it is worth making sure that they have this knowledge and understanding.

 

As a parent whose son was 'unpicked' by a professional who did not have this knowledge and understanding and was left with a son on suicide watch then it really is a good idea to make sure about their credentials.

 

Carole

I'm sorry, I hope I have not caused offense. Perhaps we have been fortunate with the OT who has worked with our son.

[oracle]

Glock no offense taken - really - it's just that not all professionals do not have the knowledge and understanding and they can actually do more harm than good - so it does no harm to ask about the professional who will be working with your child.

 

<'> Carole

[bettybiscuit123]

My son got diagnosed in Dec and since then we didnt recieve any support, it has been down to us to find the support. Thanks to the internet I have found alot of groups and organisations that give the support needed for newly diagnosed families. You really do need the internet now-a-days, if it wasnt for the internet I wouldnt have been able to get in touch with the support groups out there and wouldnt of even known that they existed! I must say my health visitor has not been very helpful at all, and hasnt helped, i know this isnt always the case I just think we were unlucky!

[justamom]

Thanks guys for all your replies it really does help me in my quest to get the correct support.

 

Carole, you are so right!!! I also believe that there is no such thing as mild aspergers, my husband really hangs on that word "mild" as he has taken the dx bad.

 

thanks again

justamom

[mossgrove]

Lainey

 

Some of the problem is that you have not been told about the services in our area.

 

You have a pm

 

 

Simon

[JUST A DAD !!]

Thanks guys for all your replies it really does help me in my quest to get the correct support.

 

Carole, you are so right!!! I also believe that there is no such thing as mild aspergers, my husband really hangs on that word "mild" as he has taken the dx bad.

 

thanks again

justamom

 

I dont think your husband hangs on the word "mild" , it is probably just taking him time to accept the situation. and will get there in the end!!!!!!!!!!!!

[Jill]

The Boy is only 4, but we get:

 

The LEA have got him a place part time at a local autistic nursery

The SALT visits there weekly

The Clinical Paed assesses him quarterly (but this is not worth the effort we go thru)

The Ed Psych assesses him every 6 months (this is worthwhile).

The school monitors his progress & we have our first meeting with them next week (this will be quarterly) and their input will feature highly on whether we get a statement for him or not.

His hearing is checked every 6 months for now (but I think that's cos it's difficult to assess properly because he's non verbal & doesn't like the "dancing pig" they use as a reward when he reacts to a sound - he hides when he hears the sound cos he knows the dancing pig is coming out )

[oracle]

I dont think your husband hangs on the word "mild" , it is probably just taking him time to accept the situation. and will get there in the end!!!!!!!!!!!!

 

I really do not think that it helps anyone when a professional tells a parent that a child has 'mild' anything. You would not say that someone was mildly paralysed would you?Until they know that child pretty darn well how can they tell if the child is mildly affected? The word mild also impacts on Service Provision. They hear the word mild and that tells them that the child is unlikely to need Services. If you live in an area that does not have much on offer then you are sunk.

 

It's not easy for Mums to come to terms with a dx either that is often forgotten Coming to terms with anything like this can take a long time for both parents but while you are then labels like 'mild' are actually helping to make your life more difficult.

 

Carole

[neda]

ive never heard of SALT,how do they help?

 

SALT is Speech and Language Therapy. They are currently carrying out a pragmatic profile on my son to assess his use of language socially. They will be reporting back to ed psych regarding their work with my son and his level of understanding. Not sure what else they do, but I'm sure someone else could let us know.