Newly Diagnosed 4 yr old Son

In relation to your comments about your family reaction I was also amazed at the reactions I have had.  My father said simply "sorry pet.  I don't know what to do.  I wish your mother was here" (she died of cancer 7 years ago!  My sister instantly asked if there was a special needs school for my son to attend and then started getting all angry with me saying I needed to fight everyone for the sake of my son! My 93 year old grandad was probably the most supportive, with his wise words of "you are doing really well and I am very proud of how you are coping".  Other relatives ranged from "can they give him something to calm him down? (Meaning medication) to "Aw, poor thing.  He is such a lovely boy.  You would never know there is something wrong with him!"  I was even in the local baths once and a woman who had a brother with Aspergers reduced me to tears by telling me she did not frankly give a damn about my childs problems in school, that when it came to her precious daughter losing reading time with the teacher, she thought he should be home schooled!"  So - after the initial proverbial smack in the face with the shock of all of these reactions, it is little wonder that parents take two routes - either sink or swim!  I can laugh about this all now, but at the time it was happening I genuinely thought I may be going a little insane myself and that I was living in a world full of aliens!  Luckily I came to my senses and down to earth pretty quick and realised that I was the pivotal person that could flow alongside my son and help direct his needs to enable him to feel happy with the world around him.  The main issue I am looking at at the moment I totally agree is this educational system.  I went straight to the top person in my local authority after an incident at school where my son was left un supported (due to burning off of school support assistant hours was the reason given by the Head Teacher) and then he became frustrated and lashed out turning over tables and hitting a pupil.  He attends a great wrap around provision and then is effectively babysat when he returns to his mainstream setting where the support assistants are lovely but totally unexperienced in effectively supporting his needs.  This means that my son gets to go into the photocopying room alot by the sounds of things and press the button to copy!  This is a child who at home at night with me plays chess and beats me, can focus for upto three hours at a time on reading through the lego model instructional booklet, counting all of the parts for me and who reads Famous Five and Enid Blyton books to me - when at school his reading level is much lower! 

What I found most useful in Scotland was the GIRFEC (Getting it Right for Every Child) Framework - just google it!  It is the same framework that is called Every Child Matters in England. It basically tells everyone that in terms of education a child with a disability has the right to have someone called a "named person" who acts as go between, between the different agencies and the family - like a sort of family liason person.  This named person gathers all of the info and works alongside the family to present the choices available to them - such as in our case - shall our child attend SEN education or mainstream school with extra support?  Regardless of whether your child is officially diagnosed or statemented this framework is in place and should be followed.  I had to ask the Head Teacher of my mainstream who is my named person and he actually volunteered to be the named person, which is good, as it now stops him from thinking about the school budgets and about what my sons support needs are.  Individually everyone I am interacting with seems great, it is the process and the time it is taking to get things sorted that is frustrating us.  This NAS site also tells you the process of diagnosis so if you read up on GIFREC if you are in Scotland and then read the NAS route to diagnosis this will give you a kind of road map (and also some important framework jargon to advise professionals about if they are not following this pathway and keeping you upto date with things.) As there are cutbacks in the services for ASD many local government departments have changed and charities that have previously supported have lost their funding, so it is often difficult to find the exact right person to talk to.  Never give up and know that you have others who are treading the same pathways as yourself and that although it is like SAS training at times, our role as a parent is to bring our kids up to live happy healthy, independent lives, and will feel they are a useful and accepted member of our society.  It is not about us, it is about them.  Everyone in the multi agency team will have something you can learn from which will help you in the future, so try and keep an open mind.  It is like playing baseball, someone always balls up occassionally and it takes time to form a really great team and for people to let go of their own personal agendas.  I am shaking up mine next week so I will let you know how things have gone!  By my email to the top I now wonders of wonders have an immediate appointment for a second assessment towards diagnosis (as they are also querying ADHD as well as Aspergers).  Keep your chin up.  This is the only forum I have joined! 

In relation to your comments about your family reaction I was also amazed at the reactions I have had.  My father said simply "sorry pet.  I don't know what to do.  I wish your mother was here" (she died of cancer 7 years ago!  My sister instantly asked if there was a special needs school for my son to attend and then started getting all angry with me saying I needed to fight everyone for the sake of my son! My 93 year old grandad was probably the most supportive, with his wise words of "you are doing really well and I am very proud of how you are coping".  Other relatives ranged from "can they give him something to calm him down? (Meaning medication) to "Aw, poor thing.  He is such a lovely boy.  You would never know there is something wrong with him!"  I was even in the local baths once and a woman who had a brother with Aspergers reduced me to tears by telling me she did not frankly give a damn about my childs problems in school, that when it came to her precious daughter losing reading time with the teacher, she thought he should be home schooled!"  So - after the initial proverbial smack in the face with the shock of all of these reactions, it is little wonder that parents take two routes - either sink or swim!  I can laugh about this all now, but at the time it was happening I genuinely thought I may be going a little insane myself and that I was living in a world full of aliens!  Luckily I came to my senses and down to earth pretty quick and realised that I was the pivotal person that could flow alongside my son and help direct his needs to enable him to feel happy with the world around him.  The main issue I am looking at at the moment I totally agree is this educational system.  I went straight to the top person in my local authority after an incident at school where my son was left un supported (due to burning off of school support assistant hours was the reason given by the Head Teacher) and then he became frustrated and lashed out turning over tables and hitting a pupil.  He attends a great wrap around provision and then is effectively babysat when he returns to his mainstream setting where the support assistants are lovely but totally unexperienced in effectively supporting his needs.  This means that my son gets to go into the photocopying room alot by the sounds of things and press the button to copy!  This is a child who at home at night with me plays chess and beats me, can focus for upto three hours at a time on reading through the lego model instructional booklet, counting all of the parts for me and who reads Famous Five and Enid Blyton books to me - when at school his reading level is much lower! 

What I found most useful in Scotland was the GIRFEC (Getting it Right for Every Child) Framework - just google it!  It is the same framework that is called Every Child Matters in England. It basically tells everyone that in terms of education a child with a disability has the right to have someone called a "named person" who acts as go between, between the different agencies and the family - like a sort of family liason person.  This named person gathers all of the info and works alongside the family to present the choices available to them - such as in our case - shall our child attend SEN education or mainstream school with extra support?  Regardless of whether your child is officially diagnosed or statemented this framework is in place and should be followed.  I had to ask the Head Teacher of my mainstream who is my named person and he actually volunteered to be the named person, which is good, as it now stops him from thinking about the school budgets and about what my sons support needs are.  Individually everyone I am interacting with seems great, it is the process and the time it is taking to get things sorted that is frustrating us.  This NAS site also tells you the process of diagnosis so if you read up on GIFREC if you are in Scotland and then read the NAS route to diagnosis this will give you a kind of road map (and also some important framework jargon to advise professionals about if they are not following this pathway and keeping you upto date with things.) As there are cutbacks in the services for ASD many local government departments have changed and charities that have previously supported have lost their funding, so it is often difficult to find the exact right person to talk to.  Never give up and know that you have others who are treading the same pathways as yourself and that although it is like SAS training at times, our role as a parent is to bring our kids up to live happy healthy, independent lives, and will feel they are a useful and accepted member of our society.  It is not about us, it is about them.  Everyone in the multi agency team will have something you can learn from which will help you in the future, so try and keep an open mind.  It is like playing baseball, someone always balls up occassionally and it takes time to form a really great team and for people to let go of their own personal agendas.  I am shaking up mine next week so I will let you know how things have gone!  By my email to the top I now wonders of wonders have an immediate appointment for a second assessment towards diagnosis (as they are also querying ADHD as well as Aspergers).  Keep your chin up.  This is the only forum I have joined!