Referral Process Information Please

[blm]

Hi everyone, I posted on here a LONG time ago now and haven't really got anywhere to be honest (mostly due to me not pushing things with the Dr/School, trying alternative ways to deal with my son's behaviour because of everyone making me feel that I was being a paranoid mother).

 

My son has had unusual behaviour/traits from a toddler and I've always had a 'feeling' something wasn't right. I was never sure what but knew he was different to all the other children I knew. The list of symptoms seems endless but the thing that is pushing me over the edge is the constant crying and my son's inability to control this crying. He will cry when embarrased; when things do not go the way he expected/hoped; if he loses; if he doesn't understand something; if he cannot do something asked of him - to be honest, the list is very long!

 

We have tried deep breaths, counting, thinking of something funny and more recently I thought of trying a thoughts book so he could try to tune into feelings more and write his worries away! It has really helped us understand his fears/worries but it has not stopped the crying and we are constantly on edge that he will melt down - particularly during a football game (which he absolutely loves). If the other side score, he will cry (loud!). We have tried everything: ignoring; talking; cuddling; disciplining and nothing is working. He has been picked by an academy to train with them which he is over the moon with but he is on the brink of messing it all up due to the inability to control his crying.

 

I spoke with his new class teacher about his lack of comprehension/understanding and inability to explain things affecting his learning and it is the first time the school has shown some concern regarding his behaviour in school. He apparently doesn't cry in school any more (last year he did this lots) but she has noticed rocking and also him covering his ears once when she was reading a little loudly (and he was sat next to her).

 

I made another appt with a new Dr at my local surgery and explained brief problems and symptoms and the things we have tried and the fact that it is affecting the family in a bad way now and he wants me to give him list of things he does/says etc and he will refer him to be assessed. I am convinced he has Aspergers (or something similar but I am not a Dr so it could be a number of things I suppose) but just wondered what the process was and what to expect.

 

Any advice gratefully received. Thank you

[kateg]

Hi

 

I've had similar woes from people thinking I was over reacting- or that is how I perceived it as they (friends, family, school) tried to 'reassure' me when I explained my concerns- which only really served to make me feel like I was unable to cope when everyone else could. I first pushed for assessment when my son was 3 and was told he was just very bright and bright children are quirky.

 

This time last year, when he was 6, I had reached the end of my tether and asked to be referred again. I told the school and the head told me he was fine, just picking up on my anxiety (as I was 'very clearly an incredibley nervous person'-so would you be if you were surviving on 3 hours sleep every night due to your son being up!). She also told me I was clearly unable to cope with my own children.

 

Anyway, the Dr took our case to the weekly meeting at the practice- they all agreed to refer us to the comm paed. They went to panel and agreed to put us on their wating list. We were first seen by the comm paed in April. She agreed there was sufficient cause for concern and highlighted possible aspergers. WE were referred to sleep solutions, dietician and occupational therapy. The Educational Psycologist needed to go in to observe him at school but the school wouldn't allow her in- we moved schools and he was finally seen by the EP in November.

 

The EP report was inconclusive- he's happy at school and copes very well there (it's at home we have the problems with anxiety etc all coming out). He's got an ADOS booked for Thursday where we should know one way or the other.

 

Our journey has been a quick one from what I can gather in our area.

 

Good luck, keep on fighting.

[blm]

Thanks for your message kateg, its reassuring to know that sometimes the process is a quick one. I too am at the end of my tether and I think that was obvious when I visited the Dr - I'm just going to be a pain in the backside and keep chasing like mad! I work in a law firm so know that 'cases' get brought out of the cupboards when a phone call or letter is received so I will keep doing that and they'll want to get rid of me then

 

I KNOW something is wrong but I'm not sure whether it's anxiety alone or Aspergers but when you put all the things together, I think it's Aspergers but mild as I know some children are much worse than mine. BUT it's something that's affecting him and the family as a unit so it needs to be dealt with - it seems like because it's not physical, it doesn't matter as much!

 

Thanks for your reply

[Sally44]

It might help to list the things, situations that get him crying. He is crying because he is upset, frustrated, gets emotionally and sensorily overloaded. So you might end up with a list like this.

 

Gets upset/cries when:

 

He loses

When he does not understand what was said to him

When things are done differently to how he expects them

When asked to try something new

When asked to go into a different environment eg. xxxx

When we make a change of plan

When it is too noisey for him

 

 

You can google DSM IV for Aspergers and see what the criteria is. A child only has to get a set number of positives out of each section for a diagnosis to be made.

 

Those on the spectrum often have other things going on at the same time. At the moment a Sensory Processing Disorder is not part of a diagnosis of an ASD. But most children/adults with an ASD say that they have some sensory processing problems ranging from mild to severe. So google Sensory processing Disorder.

 

He will also have speech and language problems either receptive or expressive. So he may take language literally, may not understand some things or words you might expect for his age. Or his speech may appear very advanced, but the emotional maturity is not there to match the words he is using. He may find it hard to put a sentence together. He maybe unable to explain how he is feeling, or why he feels like he does.

 

He may often get totally distraught about things we would think were minor. And these upsets appear over the top, and last a long time. But his level of upset is how he is actually feeling.

 

Does he have any friends? Does he seek their company for them as a person, or because they have an X-box, or PS that they want to play on.

 

Does he 'chat' with you. Or is his conversation just on his terms ie. telling you things that are of interest to him, or to get his needs met eg. asking for a drink.

 

How old is he?

 

What concerns do school have?

Edited January 25, 2012 by Sally44

[blm]

Hiya, thank you for your response and I will look into the things you suggest.

 

Yes he does have friends but there are the 3 who he has known since 6 months old (so more like cousins really to be honest) and then there are a handful of boys who he plays football with but that's it. It's only really those who he has something in common with and I think the only conversations they have is about that common ground 'football'.

 

No he doesn't chat to me really (again, only about football or something he needs). You have to put a lot of work into the conversation to get anything out of him and even then it's very little! He will talk endlessly about football though! He is interested in learning factual things so you may sometimes get a conversation about that - i.e. learning about Great Fire of London at school and actually came home and told me things (although I had to ask questions).

 

He will be 7 in the summer.

 

The School just mentioned about him rocking in the classroom, covering his ears when the teacher got a bit excited reading a book one day and him being unable to explain/comprehend what he is reading. She said he is quiet but that's okay. He didn't used to like drawing etc but he is apparently now okay with this - I think it's more to do with fitting in though as he NEVER draws at home, even if his sister is doing it.

 

He has shown various sensory things (noises, smells, tastes) but the crying is the thing that is affecting us all. The inability to tell us what he has done that day at school is also very frustrating as we do not get to know about things until it is often too late.

 

I will look into what you suggest later this evening and hope this helps clear some things up for me in order to put into the letter to the Dr.

 

Thanks again for your help.

[Sally44]

From what you have said I would definately recommend that he is seen by a SALT. He should be refered to a SALT who has experience of assessing children with an ASD as part of the procedure towards a diagnosis - so check that he is going to be seen.

 

You need to ask her to carry out "standardised assessments". These are formal assessments that test for certain skills. And the assessments are the ACE, or CELF4.

 

What you are describing is typical of a child on the spectrum. My son also finds it hard to pick out the important parts of a story. But he can regurgitate facts. There is a difference. So your son would struggle to be read a story and then be asked to write something to a set question.

 

It is also interesting that he struggled with drawing. Again, this might be due to problems with 'imagination'. He maybe able to draw something ie. to 'reproduce' something he can see - but may find it hard or impossble to draw spontaneously. His spontaneous writing may also be severely affected.

 

You also need his social communication skills to be assessed.

 

And you need a referal to an OT to assess him for his sensory issues using something like the Winnie Dunn assessment.

 

Getting upset is part of the diagnosis. It can get better as they get older and as they are taught ways to cope with things. Sometimes it is down to the kind of school they are in. In a smaller, quieter, or even ASD specific school.

 

But when you are thinking about schools, you need to know what his cognitive ability is. Local Authorities have mainstream or special schools. For capable children on the spectrum they are not suitable for either ie. cannot cope mainstream, too bright for special school. But there are some independent schools out there - but that is something to think about for the future.

 

For now you need a diagnosis and then you need to ask your local authority to assess him for a Statement of Special Educational Needs.

 

He sounds like he may have a speech disorder. That could potentially rule out Aspergers because they are supposed to develop typical language skills up to age 3. So alternatively he may get a diagnosis of autistic spectrum disorder.

 

It is VERY important that his language is assessed so that he gets the right support and potentially the right kind of school.

 

So, I think you need to get the diagnosis and get a Statement and then come back and ask more questions.

 

When you do get the Statement it will most likely not be well written ie. will not include all his needs or how to support each and every need. Local authorities do this deliberately because a Statement is a legal document which the LA has to fund. If it is worded ambiguously or provision is not quantified and specified, the LA can get away with not provided it because of the wording.

 

For example wording that says "xxxxx will receive 6 hours 1:1 therapy per term from a suitably qualified speech therapist." is legally worded and you can challenge it if that is not provided. However if it says "xxxxx will receive regular input speech and language therapy." means nothing. You cannot challenge it because it does not state WHO will do it or for HOW LONG."

 

Think of the Statement as a legally binding contract of services. You must be absolutely clear as to what the Statement is going to provide. It should not contain words such as 'as required' 'as necessary' 'as appropriate' 'significantly more' 'regular' etc.

[Sally44]

This is a link to an organisation that can give you alot of advice.

 

http://www.ace-ed.org.uk/advice-about-education-for-parents/Special_Educational_Needs

 

Go through the links on the left to download information booklets.

 

Other organisations that can give you advice about the educational side of things and Statements are www.ipsea.org.uk and www.network81.org.uk

[Sally44]

This is another link to a government document giving information about the process of diagnosing autism.

 

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4090571.pdf

 

This should give you some idea of who is involved and what they do.

 

How is he doing academically. Is he reading and writing at the same level as his peers?

[Sally44]

This is a link to the Special Educational Needs Code of Practice. http://media.education.gov.uk/assets/files/pdf/s/sen%20code%20of%20practice.pdf

 

This explains the process school will go through for a child they suspect has a SEN. It is a graduated approach starting with School Action, then School Action Plus, then asking for an assessment for a Statement from the LA.

 

So it is helpful to know 'what' is a SEN. It isn't just academic stuff. A child may have a speech and language disorder, sensory issues etc.

Edited January 26, 2012 by Sally44

[blm]

Wow that is amazing information - thank you very very much.

 

To answer your question, he is learning above average - currently two or three levels away from being a free reader but lack of understanding/comprehension is holding him back now (hence my concerns). He can put sounds together brilliant apparently and his numbers is astonishing (he does lots of complicated sums in his head rather than paper like other kids in the class). I think that's why the school haven't been overly concerned before, he is above average academically and has no behaviour problems in school!

 

The thing he needs help with is the anxiety he clearly has over what I would see as a silly thing (if life is stressful now, he's got no chance of coping in the real world when he's an adult unless he gets the right help now) - life at 6 should be fun shouldn't it! He also needs help explaining feelings, emotions etc because he just doesn't get it at all. My 2 year old knows more than him about how she is feeling and how others are feeling and picks up on this straight away - it's always been like he doesn't car if someone is upset but I think he just doesn't 'get it'.

 

I also read yesterday about being fearful of things like the park and he has always been a non-climbing child who doesn't like swings, roundabouts, slides etc - he doesn't really like anything which involves an element of being injured - very fearful of everything I suppose, especially new things and places.

 

I will look through these links later when the children are asleep so I haven't got a chattering 2 year old in my ear! She honestly doesn't shut up! Complete opposite to her brother!

 

Thank you for all your help, it is REALLY appreciated

[Sally44]

Although he is able academically you have said yourself he does not 'understand' or 'comprehend'. He will be expected to be able to do that in a mainstream secondary school. But he doesn't get it. So he needs a school that can use ASD approaches, to help him with those skills and for them to deliver his work in a way that he can succeed and complete it.

 

Currently he is sitting in school/class and not getting alot of it, and he is clever enough to see that the other kids can do it and understand it. How do you think that is making him feel?? Anxious? Frustrated? Frightened? Worried?

 

He will start to think he is stupid, or rubbish, or that there is something wrong with him [those are the words my own son used to use about himself].

 

Being in the right school with the right teachers and therapies will make all the difference. It has done for my child.

 

My son is now going into school each day for half the day.

 

He went swimming with his class for the first time on Tuesday.

 

Next week he is going to stop for dinnertime and eat something with the other kids.

 

And all the kids in his class [class sizes in this school are no more than 8] are as obsessed as he is about Lego, Pokemon, Nintendo DS, Yu-gi-oh etc. And at dinnertimes they usually stay inside and play those type of games together with experienced and qualified TA's and sometimes the teacher and Speech Therapist too.

 

I cannot over emphasise the difference this school has made to my son, and to me and the rest of the family. The stress and pressure has been taken off. And I know that he is going to be in that school full time in a couple of months, if not sooner.

 

I could never have imagined that when we were under CAHMS for serious self harm behaviour and threats of suicide. That is how bad it got. He was out of school for 10 months and getting worse, not better. He now has additonal diagnosis of an Anxiety Disorder and OCD behaviour.

 

Now that your son is not in school you have reached the point where you are able to go to an Educational Tribunal and state that no mainstream school can meet my sons needs, but xxxxx school can. It will cost you money to get independent reports and for them to attend the Tribunal. But do as much as you can to get him in the right place.

 

He probably has no emotional literacy to understand others feelings or even his own.

 

His fear of the park maybe due to sensory insecurity about his feet leaving the ground, spinning etc. This is part of a Sensory Processing DIsorder. He should be getting a Sensory Integration Programme for that, but ONLY an independent OT will recommend that because the NHS do not fund it, and therefore don't specify it as provision. So IF he has SPD and an independent OT states he needs xxx hours of Sensory Integration Programme delivered by an OT who has completed modules xxxx to deliver sensory integration. And she states that her opinion is that he needs to be in a school where all the professionals are on site to deliver his Statement in a multi-disciplinary team flexible approach - then ONLY an ASD specific independent school can do that. Then add on his SALT and Dyspraxia [another OT area] and Dyslexia needs.

 

He sounds like he has very similar difficulties to my son. BUT he is doing even better academically as my son has severe dyslexia.

 

Use the links and the organisations i've listed to give you help and advice.

Edited January 26, 2012 by Sally44

[blm]

Thank you very much. The points you raise have opened my eyes further to how he may be feeling at school (and other situations where he cannot comprehend the instructions given) and completely makes sense. It looks like I need to do a LOT more research on this in order to fully understand how to make everything happen quickly and properly. As you say, it is my duty as his mother to ensure I fight and provide for his needs and I will do my best to ensure I do this. With people like you around to help, it will be a lot easier so thank you very very much. The progress your son is making sounds amazing and it is no doubt due to you being completely dedicated to making his (and his family's) life a happier one - bloomin amazing that he's progressing like he is