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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

  • 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.

  • 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 

  • personal versus impersonal...,, we live in a society that by adminstration is impersonal,, people in society have been taught to a take a third party non-risk position unless they are part of your family, and even now with individual society and high divorce rate that sphere is reducing.

    quote "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."

    adminstrator,, on the phone,, she told me she felt she understood what it was like,,,, this is the classic non-personal approach to society, that is why the NAS or any other adminstration will not work,, because it is set up not too be personal, so therefore an impersonal system is effective for individual needs.

    You need to get some face to face in this system, find real people who understand and are willing to assist,,, unfortunately where are these people ? All I can suggest is do what you did with that adminstrator,, talk to them real, face to face if you can, don't mince words,, talk human ! NOT system persona.  I love doing this, speaking in real tongue,, adminstration system can not handle it,, the human side is trained out of them,, but the more we all just speak truth, the better the world will be.

    TELL THEM HOW IT IS for you ! Get personal with true honesty.