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help please

loulabelle73

Hi all, I am lou a 41 year old single mum of 7 children aged 21.20.19.twins of 14, 7 and 4.My youngest son(who turned 4 last week)was diagnosed with spina bifeda and possible cerybral palsy at 3 years old, the last mri he had showed a large mass of damage to his brain but he is still undergoing tests to see what the cause of this is, there has always been mention of him being autistic aswell, not contacted to the damage and at long last after seeing so many different doctors for all his problems we finally saw a specialist last week who agreed he thinks he is 99.9% certain he is autistic and has refered him for the tests to diagnose it. He is getting worse by the day and I am really struggling to cope with him, really dont know where to turn it has got to the point I cant even take him out the door other than to nursery where he has a special needs place and although they are good they have so many children with complex needs that he is still waiting to see the ot and has been waiting for months. I know in the end we will get the help we desparatley need but in the meantime i am in despair. he is so aggressive constantly towards me and his siblings, raspberry blowing,licking,biteing,shouting swearwords over and over, etc etc then the next minute he will say 'i love you so much and kiss you for ages' Its killing me as I dont know how to deal with this and what to do for the best. do I tell him off,ignore him?, can anyone suggest anywhere I can get some help now instead of waiting for all these tests to access the help.

I know this sounds garbled but I am at my wits end, having had 6 children with no learning or mental problems to suddenly have my beautiful little boy turn into someone who is making me cry most of the day because I dont know what to do to help him is hurting me so much.

lou xx

Parents

  • Hi and welcome,

    It may be worth contacting the NAS helpline. They are often able to give advise over behavioural issues over the phone, but waiting to be connected to an advisor can be considerable and direct e-mails take much longer, so be prepared to wait a while. They may also be able to send you some handouts on behaviour.

    (0808) 800 4104 

    As for assistance, it really depends what you are looking for. OT and private Autism assessments are often possible, but also come with a price tag. Private OT assessments can be obtained by looking up the OT practitioners register for someone in your area.

    www.cotss-ip.org.uk/find

    This assessment should highlight your childs needs and make recommendations which may assist in your childs support at nursery/School/home, but you should check with the nursery first that they would be willing to act on a private assessment, rather than an NHS one. We found private assessments very helpful for home support of our child and quite detailed, but had to stagger other reports because of the costs and in the end the LA insisted on doing theirs also.

    Advice/support can also be found on this forum.

    With regard to his behaviour, I know it's difficult as a mum, but try not to take his treatment of you personally. His inappropriate behaviour is likely to be an external expression of frustration and anxiety if he does have Autism and regualating that behaviour is clearly difficult for him right now.

    Also, see if you have a local Autism hub in your area, they may be able to suggest local support and help.

    Take comfort in the knowledge that you are not alone and that others understand your plight. Please post here any time, hope the above is of some help.

    Regards

    Coogybear

Reply

  • Hi and welcome,

    It may be worth contacting the NAS helpline. They are often able to give advise over behavioural issues over the phone, but waiting to be connected to an advisor can be considerable and direct e-mails take much longer, so be prepared to wait a while. They may also be able to send you some handouts on behaviour.

    (0808) 800 4104 

    As for assistance, it really depends what you are looking for. OT and private Autism assessments are often possible, but also come with a price tag. Private OT assessments can be obtained by looking up the OT practitioners register for someone in your area.

    www.cotss-ip.org.uk/find

    This assessment should highlight your childs needs and make recommendations which may assist in your childs support at nursery/School/home, but you should check with the nursery first that they would be willing to act on a private assessment, rather than an NHS one. We found private assessments very helpful for home support of our child and quite detailed, but had to stagger other reports because of the costs and in the end the LA insisted on doing theirs also.

    Advice/support can also be found on this forum.

    With regard to his behaviour, I know it's difficult as a mum, but try not to take his treatment of you personally. His inappropriate behaviour is likely to be an external expression of frustration and anxiety if he does have Autism and regualating that behaviour is clearly difficult for him right now.

    Also, see if you have a local Autism hub in your area, they may be able to suggest local support and help.

    Take comfort in the knowledge that you are not alone and that others understand your plight. Please post here any time, hope the above is of some help.

    Regards

    Coogybear

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