What to expect for the future

EmJam12
EmJam12 Online Community Member Posts: 5 Connected
in Families and carers
My son was diagnosed with autism at 3years old and also has a severe learning disibility. He attends a school for children with profound learning and complex needs. 

He is now 6 and apart from seeing his peadiatrician to review sleep medication every 6months he has no other input that we are involved with. He has salt OT all avaliable at school but we dont have reports on what they are doing or what we should be doing? He does have challenging behaviours and is very sensory he can gain skills then lose others (we assume this is park of the LD) we have questions everyday on how/what we should be doing to support him to progress but when we raise questions we are told its all part of his 'condition'. It just feels sometimes we are forgotten, his diagnosed at a special school so thats that. I think it is hard as we do have reviews at school and goals are set for him but his behaviours and needs change from one week to the next im not in any way saying school isnt doing an amazing job he loves his time there and is a happy boy i just worry so much about his future we know he will need lifetime care but want him to be as independent as possible even if that is just him being able to use a toilet and feed himself. I know every child is different and we want to know exaxtly what to expect but is that impossible to answer??  Not sure what im asking really just wondering if anyone is in the same or been in same situation as us! Xx

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  • Doris_Scope
    Doris_Scope Scope Family Services Posts: 183 Family Services
    edited August 22

    Hi

    @EmJam12

    I'm sorry to hear how you are feeling.  It is very difficult when you don't know what to expect and your son is still so young.
    My background is as a special needs teacher of 22 years in a school exactly as you describe your son going to.

    I know you said that you have reviews and goals for your son, but you could request that any reports written by the SALT team or OTs are also sent to you.  If not directly from the professionals, at least copies from the school, as they should be receiving them and could send them to you.  Also, if the school are given activities or exercises for your son from SALT or OT you could request that they are sent home also so that you could provide input at home.

    You said that your son has challenging behaviour.  Does the school have a reactive plan for him describing how to try and avoid challenging behaviour and then handle it appropriately if it arises?  If they do you should have seen it and signed it off.  These techniques should ideally be used at home as well as school so that it is consistent.

    You also said that he has sensory issues.  Does he receive things like sensory circuits or sensory integration at school.  There are lots of ways that sensory activities can be employed to build up tolerance.

    I don't know if you have looked at the site (you probably have) but the National Autistic Society (NAS) provide lots of information on things like these and could also give you some advice.  The link is 

     and they also have a helpline which is 

    0808 800 4104.

    The best bet is to speak to his teacher.  She should be understanding and can provide any information that she has been given.

    I hope this helps a little.

    https://www.autism.org.uk/

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