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Feeling let down

Lou31

Hi has anyone else been in this situation???

For 3 years we've been fighting for my son to get his diagnosis.  That is 3 years of meetings, appointments and assessments (well I'm sure most of you know what it's like!!!).  All the professionals agree ASD - that is the senior SALT, senior EP and consultant Paediatrician.  But we can't have an official diagnosis because we haven't been through the correct procedure!?!  We have to wait another 6months if we want a diagnosis although I only have their word on the timescale and suspect it will take a good deal longer.

Why can't they understand it's hard enough as it is without making us jump through hoops.  I got cross with an administrator on the phone yesterday after she told me she felt she understood what it was like - I told her unless she'd been there she couldn't possibly imagine.

On top of that all the other parents I meet seem to have very high functioning children and although my son is verbal and doing really well I've been told he has moderate to severe learning disability and developmental coordination disorder.  Have a wonderful supportive family but am beginning to feel like we're the only ones out here...  I worry about the future.

Thanks for reading

Parents

  • hi lou i dont know how old your child children are but my son is 13 and with out a school and has been for three months now 

    i constantly feel isolated and alone having him as my son he is a twin and they wind each other up all the time i sometimes wish the floor would open up and take the problem away

    i waited 12 years to hav them and now feel so weak that i cant cope with my son his father is the same and i have had years of his behaviour too which my son just copies 

    i work from home which adds its own problems especially at holiday times when both my too are home just about cope with just my son home

    its a lonely place when your child doesnt fit in and you know that one day the world will have to cope with them too

    so i would love to chat to someone else with simular problems in the family house hold just for sharing really whats your story would love to hear all

    ond 

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  • hi lou i dont know how old your child children are but my son is 13 and with out a school and has been for three months now 

    i constantly feel isolated and alone having him as my son he is a twin and they wind each other up all the time i sometimes wish the floor would open up and take the problem away

    i waited 12 years to hav them and now feel so weak that i cant cope with my son his father is the same and i have had years of his behaviour too which my son just copies 

    i work from home which adds its own problems especially at holiday times when both my too are home just about cope with just my son home

    its a lonely place when your child doesnt fit in and you know that one day the world will have to cope with them too

    so i would love to chat to someone else with simular problems in the family house hold just for sharing really whats your story would love to hear all

    ond 

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