So Tired can anyone help

[Haze]

Hello:thumbs:

 

I am new to the site so please bare with me i'm not very techie. I have two beautifull equally gifted kiddies the eldest his nine the youngest his five just. We are ( hubby ) fighting like hell to get answer's for our youngest who has been diagnosed as aspies by one consultant the problem his the cheif consultant who make the referrals to the Professor Green refuses and were not the only one's, she want's to leave it yes he's our son not an object till he nine as least. We are shattered endless argument's with kiddies who invade his space or he upset's due to not reading body cues. He loves routine and routine with everything and i mean everything, textures and lines on sock's , change in rountine or new item's send him awol and we have to change it back. Loves to have buddies but mis read's body language and argument's start or they walk off leaving him feel like ######. Being crimbo not one in his class as invited him to parties this really hurt's as mummy i want to shout from the roof he's beautifull. We distract him as much as possible. He as just started reception and doing well a few hiccup's slapping other's , sharing and moving around at speed and head slapping himself. We are new to aspies so have had to research it to see why does what he does and like the doctor aspies his the answer. I am worried school are holding back some of his behaviour until today when they sent him home sickness was the reason. No temp ,vomiting nothing he was jolly and enjoyed three sandwiches ham and jam. So sorry to blow your mind :blink: . I would love anyone to shed a light on the issue and any solution's would be greatly helped:thumbs: . Before i go he loves all thing's gadget , hates writting and loves reading.

[Sally44]

I think that waiting until 9 is not good. Usually there is a period of around 18 months when a child is observed and assessed before a diagnosis is given. If you don't have a diagnosis, I would go back to your GP and ask to be referred again to a multi disciplinary team that can assess him and which has experience of diagnosing autistic spectrum disorder.

 

If anyone tries to fob you off again tell them that his difficulties are affecting his education and social interactions and that you are going to start the Statutory Assessment towards a Special Educational Needs Statement and that for that it requires that "every need" is identified to be included in the Statement. And therefore a "diagnosis" is crucial in identifying what his needs are.

 

[Down load a copy of the SEN Code of Practice from the Educational form at the top of the page under "publications". This will explain to you about the graduated approach to the SEN process ie. School Action, School Action Plus and then assessment for a Statement]

 

The SEN process is not just about 'academic attainment', in the SEN Code of Practice it details the SEN areas ie. speech and language/social communication, emotional and behavioural, sensory and physical, academic and specific or general learning difficulties.

 

I would recommend that you contact the National Autistic Society because they have parent helplines. Ask to be put on their "Help" Seminar lists [these are seminars that parents can attend which give lots of information about various aspects of an ASD. They have seminars for parents of newly diagnosed children.

 

Phone your local authority and find out who the Autism Outreach Teacher/Autism Advisory Teacher is and speak to them. They can go into school to give school advice [but school have to invite them to go in].

 

The Multi Disciplinary team i've mentioned above usually includes a speech therapist, clinical psychologist, and paediatrician. Being fully assessed by a speech therapist is very important because if he has an ASD he must have significant difficulties with speech and language and social communication. Although he may be talking, that does not mean his expressive or receptive skills are at the same level. Often our children have what is called a "spikey profile", which means some skills they are good at and others they are not. Eg. my own son scores around average in some language skills, yet has other areas that are severely affected ie. formulating sentences. He can talk alot about things that interest him. But ask him to talk about something he does not know in detail and he cannot. This affects his ability to write spontaneously.

 

There are also lots of other disorders/conditions that can accompany an ASD and you need to keep an eye out for them eg. ADD/ADHD, Dyspraxia, Auditory Processing Disorder, Sensory Processing Disorder, Anxiety etc.

 

In what way did the school say your son was ill? This is quite common, but it is related to sensory processing and/or anxiety/excitement. In the same way that some children are travel sick, the environment [noise levels, smells, movement, taste/textures, touch] can make our children feel ill if they become overloaded or overwhelmed with sensory information that they cannot integrate or process.

 

My own son used to get lots of headaches, vomitting in school, be very tired.

 

Does your son have any sensory issues ie. appear over or under responsible to sensory processing. Does he appear deaf? You said he prefers certain textures. What is he like having his hair washed/combed, or nails cut. These are are all areas an Occupational therapist should look at.

 

It is common not to be able to read body language, voice tone etc. Your son may not be able to monitor his own emotional or sensory state. He may not understand the emotions of others.

 

The speech therapist's remit is speech and language AND social communication/emotional communication.

 

You need to ask that all professionals carry out standardised assessments. These will give a baseline from which you can measure progress. Because if progress is not being made that should trigger increased input or more assessments to find out why progress is not being made. It is also your main argument for asking for more support, professional input or therapy. So it is VERY important that these assessments are made.

 

I would go back and ask for him to be assessed. Many children are diagnosed before they start school. Waiting until nine would mean he may have struggled through the whole of primary school, and it won't give you time to sort out an appropriate secondary placement either.

 

Ask your GP to refer you to an Occupational Therapist due to him being sent home ill when there is nothing wrong with him. This could be a sign that he is not coping in the current school environment. You don't want that to deteriorate. He may associate feeling ill with school and then start to refuse to go.

 

I would also advise you to get the list of primary schools from your local authority. You want to know all the maintained mainstream schools, including those with an autism unit as well as the special schools that are for children with an ASD. Go and visit them to see what other kinds of placements are out there.

 

IF the difficulties he is having at his current schools increase, the school must seek advice from the speech therapist and educational psychologist. The school has budgets for these professionals. They should all be working to support him more, or make adaptations or give him certain therapies etc. But if there is no improvement or he deteriorates, you have to consider that an autism unit maybe a better environment. It depends too on what the peer group is like in the unit - but usually to get such a placement the child would need a diagnosis and a Statement of Special Educational Needs.

 

I know this is alot to take on board. But you really cannot delay things. You need to go back and not take no for an answer. Get advice from the National Autistic Society and other organisations that help SEN children eg. www.ipsea.org, www.ace-ed.org, www.network81.org.

 

Remember that supporting your child [or any child] costs money. So there is not a big incentive to identify needs because needs = support = money. But the SEN LAW says that every need has to be identified. The only legally binding document is a Statement. Whatever support, therapy, placement is detailed in the Statement has to be provided.

 

Also try to find out about any local parent/child groups that meet. It will be very helpful to meet other families because they will have alot of local information and advice for you.

 

Your local authority will also have a Parent Partnership. These are people that can give advice/support to parents of SEN children. They are employed by the LA, so their independence is somewhat questionable, but they should answer questions and give advice and they can also come to any meetings in school with you. I don't know if their remit stretches to going to hospital appointments??

 

I know that some professionals are very opinionated. But a diagnosis is very useful in starting the Statementing process [but it is not essential]. By not identifying need and by not diagnosing they could be stopping your child getting access to the supports and placement that he needs. An experienced team would be able to diagnose or rule out an ASD at his age.

Edited November 25, 2011 by Sally44

[darkshine]

Hello

[cmuir]

Hi

 

I agree with Sally that waiting until he's 9 is far from ideal. We hear lots and lots about early intervention, and I can appreciate that the diagnostic process can be a lengthy one (given it usually involves a number of professionals e.g. OT, SALT, etc), however asking you to wait 4 years is excessive and unacceptable in my book. Kiddo could potentially lose out on support. Could be that this person would like to see how kiddo gets on at school, however, again, I still think 4 years is ridiculous. In my experience pester power can help – when my son was referred to the Communication Clinic, we were passed from pillar to post and no one seemed prepared to want to make any decisions. After some 19 reports, I'd had enough and heard about a fantastic consultant whose specialism was ASDs. I remember bypassing everyone and phoning her secretary, explaining the situation, and asking for a cancellation. Got there in the end! Can you bypass this individual and seek a referral from anyone else to the consultant?

 

Best wishes.

 

Caroline.

Edited November 25, 2011 by cmuir

[Haze]

Thank you all for the swift reply's

 

Sally and cmuir and darkshine, Firstly i will look into the info posted and we thankyou now the school he attend's are mainatined by themselves in other word's they are not council funded, next as i explained all the kiddies are neighbour's and are close by and my daughter's freind's have disclosed information on him. To help give you an understanding you have to go through one class to get to another 1970's build so all the kiddies get to see each other all day. This is how it as been witnessed he sit's next to the exit in assemblies, was seen head banging the wall whilst rocking yes i agree i was horrified. Head butt's the kiddies on odd times no explanation given but got firm ear bashing i wanted to slap his teacher and when he was sent home he had earache and that's not the first i refused on the first time they tried kicking him out. We have found another school and does cater for autisim. I need to explain also we got into serious trouble keep taking him back to the doctor's the social got involved despite no evidence they argued we was to back down and allow the consultant to do her job. A year it took us to be cleared of all allegation's which was not backing down that he was different and they had witnessed it on nuerous occasion's .Due to my hubby working it was me that collected him and took him to the doc's explaining that he was getting into mischeif, hated flying the sound of the engine etc. So now we are terrified and school are not telling us everything in case i march to the doc's and demand answer's. Where we live money is key and this is the most frustrating part we are having a center of excellance unit bulit for all aspect's of autisim with every kind technology needed but we can access it. He did have grommit's and now as hearing so finely tuned it's on a level of a bat. We are stumped and at the mercy of the consultant.

 

 

[Sally44]

This consultant is not the only way to get a diagnosis.

 

Have you spoken with the National Autistic Society to see if they can give you any advice.

 

Was it suggested that you had Muchausen or something similar??

 

Are you saying you cannot afford to get a private diagnosis?

 

Somestimes, once a label has been given to a parent or child and is on record, that is the line that everyone seems to take after that, rather than question the file notes.

 

Rather than going on what you hear about in school. Can you show that he is not making progress in school? Progress can be academic, speech and language, social communication, emotional literacy, sensory processing etc?

[Haze]

This consultant is not the only way to get a diagnosis.

 

Have you spoken with the National Autistic Society to see if they can give you any advice.

 

Was it suggested that you had Muchausen or something similar??

 

Are you saying you cannot afford to get a private diagnosis?

 

Somestimes, once a label has been given to a parent or child and is on record, that is the line that everyone seems to take after that, rather than question the file notes.

 

Rather than going on what you hear about in school. Can you show that he is not making progress in school? Progress can be academic, speech and language, social communication, emotional literacy, sensory processing etc?

[Haze]

Hi Sally

 

yes it was fabricating illness but all allegation's were dropped after no evidence could be found. My .eldest was under camms for eating due to stress and one visit he decided after an argument during the appointment to pick the roof of a doll's house up and clobbered her in the nose her consultant just sat there documenting how i reacted. Trust me this is true so i had to give her first aid then discipline him for the incident. Then i shouted at the consultant who was still sat there for christ sake can have some help. This was disscused at meeting and there answer was he was upset again all documented. If i wasn't so tired i would sued them for slamming our parenting capabilites. Mind you our local trust is alway's getting it wrong and then sued. We are alway's being watched despite being cleared and the one who is suffering is him. It is case of power parent agaisnt the consultant and who is going to back down first and because we won't they brought in the social and we are not the first during the year we met another four families going through the same thing. As for private treament it get's you know where they just delay it further and eventually you pay private again. This is the reason i came onto the forum to get advice and help.

[Sally44]

If you do get an independent diagnosis they cannot ignore it legally. They may try to do that, but if you go to an educational tribunal they will accept the independent diagnosis and any other independent reports.

Try not to get into loggerheads with anyone. If they are not helpful, then just go round them.

For educational advice have you tried www.ipsea.org.uk, or www.ace-ed.org.uk, or www.network81.org.uk, or www.nas.org.uk. They all have helplines and they can tell you what the law is, rather than NHS or LA criteria.