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Reassurance and advice needed please!

IMR2014

Dear all,

I am new to this forum and in fact this is the first time I have ever used a forum so please bare with me!

Myself and my partner have a beautiful 3 year old who has had a number of issuea since birth. He was born early by 7 weeks and this seemed to impact on his general health and development. He spent his first 2 years in an out of hospital. He had feeding difficulties and as such had SALT involvement. She ended up referring him to the community peaditrician the reasons for this is because she felt there were some delays.

The paediatrician stated that he was delayed in some areas and referred him for portage. After his first birthday there seemed to be some improvement he walked at 16 months and started interacting more so by the time portage visited it was felt he would not need there support, however they kept him on the waiting list.

Aa his health started to improve we noticed other issues like his ability to remember things such as car logos and his fascination with television adverts and anything to do with BT Broadband would you believe! In addition he never really played with toys or other children and there were some differences. When portage visited the 2nd time it was decided to give him some extra support.

His behaviour currently is completely non consistent. Sometimes he appears to be completely "locked in" to his own world and is only concerned with his own agenda and will just run (he does not walk') to one thing to the next singing repeatedely the same line from a song or making noises. This is just an example of how he behaves. He is also terrified of certain noises and is completely hyperactive with a very small attention span for anything not of interest to him. He becomes completely obsessed with things and you cannot move him on from this. More recently he cannot even sit to eat his dinner which is really worrying me. In aedition he has hardly any sleep as he cannot settle or stay awake.

He haa beem diagnosed with "communication difficulties" and is having support. He will  Start a pre school in sept for children with additional needs.

I am do confused though because sometimea he can appear quite "normal" and interreacts in a "normal" way. He is so friendly and always says hello to people and his eye contact is good. He has just started to answer questions which he was not doing before and although some of his behaviour is consistent with ASD others are not. I am just so confused and struggling to know what if anything I need to push for or if I need to be saying "no he is fine" and see how we get on. He is constantly described as a "mixed picture" and I just do not know myself which I am finding hard. Is he just naughty in which case I need to come down hard on the behaviour.

His behaviour is very challenging particularly because he doea not sleep. he cannot be left alone for a minute because he is very accident prone and he cannot do much for himself. Do childrem with ASD have issues with hyperactivity?

I don't really know what I'm asking! I just need someone to relate to my situation of a "mixed picture" any support, advice or anything would be much appreciated.

Thanks for reading  

  • Sorry for the late reply, I think you need to remember that you havnt done anything wrong! Its all to easy to think of what "could have." As for what happens next I cant really give you much of a heads up as authorties seem to do things differantly depending on where you are, for us (back in Plymouth) the ball started rolling for us with our son being observed for a short while in nursery by his keyworker as well as being visited by Portage.

    After that I suppose you could say the official start was us being referred to a pediatrician who got us into a assesment group which ran for about 6 weeks (2 sessions per week, bout 2 - 3 hours each.) I think after that assesment a panel kinda decided on each case of the children present. Shortly after that we got a written offical diagnosis.

    I prob missed a few bits and pieces there so apologies (it was a MANIC year!) The truth is that you do have to really push for what you want to happen, there are groups like Portage that can provide assistance but sometimes you will need to keep at whatever person you need. I think the whole process for us dragged out to about a year, but we still havnt started the stateament of diability process yet which apparently could take a while (he will be in school before this :( )

    It is stressful as anyone else will tell you, but sometimes you need to let that out I think, it kind of worked for us. Also I think there are a few charities that provide councelling / support JUST for the parents / carers involved, I think I heard "Face to Face" mentioned but cant be sure.

    Sorry for the waffling, it prob all didnt make much sense =D Just be sure to look after yourselves as well!

    (Apologies for any spelling mistakes! :) )

  • Thank you so much for your comment.

    Right now I just feel anxious for the months ahead and how our son will cope with pre school etc. I also feel anxious about pushing for a diagnosis. Will they assess him or not and how much pushing will I have to do? Does he or doesn't he have ASD and if he doesn't why does he behave in the way he does? Have we done something wrong? These are all questions that run through my mind all the time so it's quite stressful.

  • Hey IMR! My son was 3 when he was diagnosed, similar in some aspects. We went ahead with assesment which was stressful to go through but to get a more clearer picture for us , was worthwhile.

    We also were referred to Portage and had a fantastic worker whom our son came to love, she taught all kinds of stuff so I would personally push for their support, she also became a strong advocate for our son and did a lot of door opening.

    Something else to consider is how you both are feeling! Dont be afraid to seek support or vent (read as: rant) there are a few charaties out there who provide this service. Look after yourself too!

  • Thanks so much to you all. I am guessing that diagnosis is a minefield?! Would anyone of you be kind enough to explain how long it takes/what age they start?

    I think making a list is a great idea and I'm going to start that. I suppose I don't want him labelled unneccessarily but also my instint is that something is not quite right but then again what do I know! I am a first time mother so nothing to compare.

    Re the weighted blankets I had heard of those. He seems to like the feeling of pressure (he likes me to push my nose and face agaisn't his!) he also likea me to brush my hair over his face so maybe things he could touch in his bed would help. Where do I get the blankets? Yes we tried the music but it seemed to distract him more so we stopped I might try the waves though, I'm with you I think they are very relaxing!

    thanks again

  • Personally I would press for a diagnosis.  As you say you don't know if he is being naughty or has underlying issues affecting his behaviour.  Until such time , if I was you,  I would document all his behaviour and then when you see the experts you can say he does xyz at home, but not at xxxx home why is that?  Try to identify as many questions that you need answers to, this will help you understand your son's triggers and how to deal with them 

    're sleeping my son's when they were younger has weighed duvets as they liked feeling snuggly, one liked to listen to ocean wave sounds and had a, night light.  The other liked lavender scent on his pillow and loads of soft toys.  A warm bath and a favourite story were a must.  Even then I had to stay with them until they fell asleep, so maybe the ocean waves sounds were more for me as I really enjoyed bed time.

  • Hi IMR2014,

     Personally i would advocate going ahead with assessment. At least you will be able to get a more detailed picture.

    How people present is hugely variable. No two people present identically, which is what makes the condition so difficult to identify in some instances. If your son is already on the waiting list then you have nothing to lose.

    Bare in mind that with ASD, early detection and support can signifcantly improve certain aspects, so If your son does have ASD early detection will be hugely beneificial. Additionally, other areas of need maybe identified (ADHD) and support for those will be forthcoming.

    Regards

    Coogybear XX

  • Thanks so much for your replies. Strangely enough he has been at my mums house all day and she had another boy round to play. She reports good eye contact, turn taking and that they interacted very well. But then on the other hand I met with his portage worker today who believes he should be seen by the complex communication diagnostic team! It's so confusing and I just don't know what to do for the best.

  • The expression 'mixed picture' would certainly describe my own daughter as I think it would many others on the spectrum.

    I've found she is very good at mimicking others behaviour which for us, stopped diagnosis for a long time.  She can also be good at eye contact BUT I've noticed that if she's in a bigger group, her eye contact is very poor.  

    Poor concentration is common - I think its often to do with a sensory overload.  My daughter needs to be in a quiet room with few people about to be able to concentrate but she doesn't have the intense interests that a lot of people on the spectrum have.

    Poor sleep is also common as I believe is AHDH.  Again, my own daughter struggles to drop off to sleep (I think there is too much going on in her brain, trying to make sense of a world she doesn't understand) and its been commented recently that she is never still.  Even sitting down to watch tv (which she never watches all the way through a programme), she can't stop fidgetting.

  • If I could comment on just one thing - eye contact.  It isn't a universal clue, it may not affect him  this young but might do later. But also how do you know eye contact is good. It is hard to tell if a child is looking broadly in the right direction or exactly where they should be looking.

    A lot of GPs and health workers set great store by "gaze aversion" - conspicuously avoiding eye contact - looking away. But its not universal.

    The only other point I'd make is about hyperactivity - autism can be comorbid, that is that other conditions occur in association. So ADHD is possible.

    But hopefully some parents with similar experiences will be able to answer more. I just thought I ought to start something going as its 5.5 hours since you posted, and usually there's more going on.