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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 - my 6 year old son has been diagnosed but it has been a long and lonely battle to get there. We have had to fight for everything - school, support, diagnsosis, understanding, medical help, OT etc but the fight has been worth it - we are beginning to find ourselves in a place of relative calm (apart from the trials of having a son with high funcioning ASD and a 7 year old brother who cannot stop winding him up). The diagnosis has both opened and closed doors for us and our son and my heart aches with worry for the future. It is so sad that as parents, we have to go through this but I would like to say how lucky your family is to have you fighting and pushing forward - this is the only way and I know that finding the strength and power to do so is exhausting, draining and worrying. Well done to you and I do hope things beging to fall into place. It took us our sons whole life to finally get the diagnosis - a 6 year battle but worth it in the end. Chin up and well done you. Use this website to rant and rave - I have and it is therapeutic because you do truly realise there are people who DO know how you feel - this is very rewarding to know and prevents the deep pangs of lonliness on those very bad days.  Good luck.

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  • Hi - my 6 year old son has been diagnosed but it has been a long and lonely battle to get there. We have had to fight for everything - school, support, diagnsosis, understanding, medical help, OT etc but the fight has been worth it - we are beginning to find ourselves in a place of relative calm (apart from the trials of having a son with high funcioning ASD and a 7 year old brother who cannot stop winding him up). The diagnosis has both opened and closed doors for us and our son and my heart aches with worry for the future. It is so sad that as parents, we have to go through this but I would like to say how lucky your family is to have you fighting and pushing forward - this is the only way and I know that finding the strength and power to do so is exhausting, draining and worrying. Well done to you and I do hope things beging to fall into place. It took us our sons whole life to finally get the diagnosis - a 6 year battle but worth it in the end. Chin up and well done you. Use this website to rant and rave - I have and it is therapeutic because you do truly realise there are people who DO know how you feel - this is very rewarding to know and prevents the deep pangs of lonliness on those very bad days.  Good luck.

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