Way out of my depth!! Please help!

Hello, have just joined this site in the hope that someone will be able to help me?

I feel totally out of my depth and so lost with what is happening and what I should be doing.

I have a 9 year old son who got on well at nursery, was toilet trained by the age of 2 and was always a very happy toddler.  He started school well and was described as very caring child.

In the last few years, I have watched him fall further and further behind the rest of his class.  I don't feel I could do much more with him at home, we read together nearly every night, I practice his spellings and handwriting with him and always spend a lot of time working on his homework with him.  I am confident that he has dyslexia and have been pushing the school to make an assessment for a while.  I am also convinced that there is something more going on with him. Having done a bit of my own research and reading, I came across ADHD which seemed to describe him to a t apart from the fact he is not majorly hyperactive.  I went to my GP and got referred to CAMHS with our first few appointments in May/June 2011.  The Educational Psychologist we saw was lovely and I was really confident in her.  She referred us to the Family Therapy unit as she believed that some of the behaviour my son displayed may have been due to issues with his dad (we separated when my son was 1, he then re-married and moved to his wifes hometown in Hereford.  They now have 2 daughters and see my son every 3rd week or so, he often lets my son down and there have been a few incidents which have upset him too).  The Ed Psych thinks that dealing with these issues and my son's place in our family may help with some of the behaviours (I am now married and have 2 daughters, my son recently started calling my husband 'dad' after 7 years). 

We finally got our appointment through after 4 months of waiting and are seeing the family therapy unit next Monday.

Last week we had another meeting with a new Ed Psych who has taken over from the lady we had in May.  I am certainly not impressed with him. He said he could totally rule out autism because he didn't show any signs at the age of 2 or 3 and that it was less likely that he has ADHD as he is able to concentrate on a film or video game when he is interested.  This contradicts everything I have been reading recently and have now come across asburgers, tourettes, OCD and different types of autism and am so confused because he seems to have behaviours and characteristics from so many of them.

In the mean time my son's behaviour at school has been deteriorating and I was called into school today because of his lack of respect, shouting out whilst on the carpet and throwing pencils.  The teacher said that when she was talking to him, he just looked blank as if he didn't care or understand.  This isn't the first incident at school recently.

Is anyone able to help me work out what condition/s he may have?  I know a lot of people don’t think diagnose is important (including the second Ed Psych I saw) but I think it is important as without it, my son won’t get the help and support he desperately needs.

·         He shouts and gets loud at inappropriate times (in class/when excited)

·         He cannot stop himself touching things; he has to be doing something with his hand whether he is picking something up, moving something, twisting his jumper etc.

·         He is obsessed with his trousers touching the floor and will refuse to wear trousers if he thinks they are too long.

·         At night I have to flatten his duvet cover, close his wardrobe door, open his room door as wide as possible and then he places his teddy behind his head, whilst I press play on his CD player with the same CD is has listened to every night for the past 5 years.

·         He has no idea of tact and tells private conversations or comments that have been made within his ear shot.

·         Makes loud noises whenever possible whether it be clapping, stamping, shouting or clicking.

·         He is scared of the dark and will put lights on in every room in the middle of the day.  I still have issues getting him to go upstairs to get something on his own at any time of day.

·         He lies quite a lot, bends the truth and says that people have said things, almost as if he thinks that’s what you want to hear.  He was also caught stealing at school recently but didn’t seem to see that it was still wrong if it wasn’t attended.

·         He has difficulty following instructions and certainly can’t do more than one or two at any one time.

·         He doesn’t really seem to get humour or sarcasm and often gets quite upset because he thinks he is being had a go at.

·         He has very low self esteem, thinks everything is his fault, thinks everyone is talking about him if you try and have a conversation out of his ear shot.

·         He loves tractors/cars... anything motor related really and will sit for ages with anything to do with this subject.

·         He loses concentration very easily, you could be talking to him and a bird will fly by which he will watch, totally unaware he was meant to be listening to something else.

·         Academically, he is at least 2 years behind at the moment but is interested in Science.

·         He gets bored very easily, not just in school but in external clubs, he finds it hard to keep interested in anything.

·         He has an excellent and detailed long term memory to the point of amazement but short term is awful, he cannot remember instructions or conversation when you ask him to repeat back what has just been said.

If anyone has managed to read to the end of this then thank you!!  And I hope you have some ideas of what I am dealing with?!  Thanks

 

 

  • Hi again,

    Glad it helped, its horrible how we have to brake through the barriers isnt it? maybe your SENCO could help with the refural process, if you have them on board and have a referal from them as well as GP it would probably be a great help.

    You never know you might have this battle finished before he leaves school!!

    good luck

    x

  • Thats a great help, thank you!  Even knowing the correct name of the type of person i need to get an appointment for is such a huge step!  My son has already been under the SENCO at school for a couple of years so hopefully that will be one less barrier to break through!

    The waiting lists are really shocking!  Feels like he'll have left school by the time it's all sorted, slight exageration maybe!!

    Thanks again for replying, it is a relief to hear there's other people out there that understand xxx

  • Hi there hope this helps and doesnt make you feel more lost,

    My son had an educational psychiatrist due to his other problems and its them that work with school but you need a clinical psychiatrist to diagnoise ASD i think. At least thats how it has been for me and my family. Which has actualy been a bit of a nightmare coz we waited 18months for the appoint with the clinical psychiatrist then it took several months of tests and form filling and interviews etc to get his diagnosis, we are still seeing her as we still are not finished as she is now doing an emotions scale thing (as you can tell im not very good with termanology and im not realy sure what the outcome of that will be, I just know he has a lot of anxiety issues and doesnt understand emotions so she is going to be working with him, anyway im getting way off point here, sorry lol)  if we have a problem with the school/college  and discuss this with the clinical psych she tells us we have to contact his educational psych.

    Admitedly this could just be how its done in my area and could just be because he already had SEN input before diagnosis. But an educational psych and a clinical psych have two very different jobs here in scotland.

    If i were you i would be asking at my next meeting at CAMHS to see a asd specialist or a clinical psych, im lucky that im seeing a asd specialist who is a clinical psych hence the long waiting lists. If you are not due back there for a while maybe your GP could refer you somewhere else. You are entitled to a second opinion or to say that you dont feel happy with the person you have been refered to.

    It is all very confusing and im not suprised you feel lost, I have been dealing with SENs etc and going to forums and meetings and researching on the internet for 15 years now and im still finding out things and thinking I really should of known that years ago. Thats why I love this forum there is always someone who knows lots more than me and is willing to explain things. Hopefully someone will come on and explain what ive just put lol!

    Best wishes and sorry for the rambling reply

    Sam

    x

  • Thanks for your reply, i really appreciate it.  Can you tell me how I get a medical assessment because it was the doctor that referred me to CAMHS to see the Educational Psycologist, I thought this was the only route so now I feel even more lost!! Will definatley find out if the guy we saw last week was an ASD specialist as he just didn't seem that switched on. Thanks again, Kate

  • Hi there,

    Just wanted to add my support and the only advice i can give is yes keeping pushing for other opinions. It was suggested to me to try and video some of my sons behaviours at one point to be able to show what was happening. I didnt need to do this in the end but thought I would pass it on to you incase it helped.

    Best of luck

    sam

    x

  • Hiya :)

    Im so sorry youre going through such troubles at the moment, I thought i would reply, not to give you answers as such but to let you know youre not on your own. Now I know that every child is completely unique, but out of all the points you made about your child, my 6 year old has 12 of your made points. They are saying he has ADHD and Autism (although he isnt at the end of diagnosis this has been said to me to identify just what they are looking at in my boy) My older boy who is also been looked at he is believed to have anxiety and possibly an ASD, however shows only 2 maybe 3 of the points you mention above. So I totally agree with KaloJaro, you really need to keep pushing at this diagnosis, it is very important in my eyes too that children get the help they need from an early age. During the process of my boys, I have found conflicting opinion between the medical specialists and the educational specialists, but my own gut instinct trusts the medical staff 100% However if its medical staff that are the ones that are giving you a hard time maybe try and gat a second or third opinion if you need too! I know its a really tough time to go through, the frustration and all the other emotions that go with it, but stick at it, there will eventually be light at the end of the tunnel for you. Best wishes, Lisa.

  • Hiya, your son sounds similar to me in some areas, now let me tell you this.

    I'm 17, I'm a girl, and I was only diagnosed with Asperger's Syndrome a month ago after I took myself to CAHM's thinking I had OCD.

    Its stupid to think that he should display problems from the age of 2/3, all the issues really show up as he grows older, like now. Keep pressing the issue! Demand a specialist in ASD to diagnose or at least meet your son then take it from there.When I got diagnosed I first met the psychologist, the next session I met her and another psychologist that specialises in ASD, the next session I was interviewed alone and did a series of tests while my mum was asked questions about me in the next room. It was a pretty long and thorough process. Don't let them put you off! This info could be the key to helping your son through life.

    Hope things work out for you.