Newly Diagnosed 4 yr old Son

Hi ohalrightthen,

Thanks for your post and it's brilliant to hear your son was the final act in the dolphin show. Did he enjoy it?

I just wanted to let you know that we do read all the posts on the forum and are here to help where we can. Unfortunately, we cannot private message you here but if you send me an email detailing your questions or concerns, I can make sure the right team within the NAS contact you.

If you email community.manager@nas.org.uk, I'll follow it up.

Best wishes,
Mike NAS 

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! 

Hi - With my nursing background I always like to keep upto date with the research on Aspergers/ASD.  I have found an article on how levels of cortisol in humans upon waking rise, yet in Aspergers they do not.  Cortisol has an effect on memory and co-ordination as well as is the hormone regulator for stimulating energy etc...  Anyone got anything more on this topic?

Hi - With my nursing background I always like to keep upto date with the research on Aspergers/ASD.  I have found an article on how levels of cortisol in humans upon waking rise, yet in Aspergers they do not.  Cortisol has an effect on memory and co-ordination as well as is the hormone regulator for stimulating energy etc...  Anyone got anything more on this topic?

Hi there

If you look at the posting on Where can I go now?  This is where Amy the 17 year old has posted.  Thanks for your advice!

Hi there,

I am loving Ohalrightthen's post about her characterful, quirky and talented boy.

I too have one like this who has just turned 5. We are still awaiting diagnosis but we have been told there is no doubt he will get a positive one for Aspergers/high function.

I have actually bypassed the grieving process and i wonder if it the fact that I have had him late on in life, after 2 M/Cs, when I thought I would not have any more children. I have an older, grown-up NT boy from a previous relationship.

I am very thankful to have him and hand on heart, if you asked me if I wanted someone to wave a magic wand and take away the ASC it would be hard to say 'Yes'. He is such a fabulous character, bright, out-going, always surprising and completely hilarious at times. I completely adore him even though he is such hard work. I so empathised with Ohalrightthen's sentence about N/T children being quite boring in comparison [sorry!].

Yes, I do wonder how life will turn out for him [and us!] but I am trying not to worry and keep positive.

There is a book called something like "It takes All sorts Of Brains" Susaye. It might help you to read it. I have seen it for sale on ebay for a snip!

Love Rosemary xxx

Hi Ohalrighttthen,

Firstly can you please direct me to where these posts are please?

Secondly, and most importantly knowing her lifes history would shed

light on her strengths and weaker areas, which may assist in making

the correct choice.

Some people on the spectrum prefer in depth help with a greater amount

of information and all things spoken about, whilst others want much less

all depends on what resources they have for managing for themselves emotionally may need support big time for such to get through a day, help to recognise such is all part of their difficulties but should be programmed/tabled into the course work with tutor recognition of such to make reasonable adjustments to aid her and to give her

knowledge/confidence that help is truely available but let her down once and that

trust will be gone in one go.

Also there needs to be an understanding of a persons physical and mental

energy which sadly to say many persons on the spectrum have not had any

diagnosis/help with, this is one of lifes essentials.

Maur

Hi Ohalrighttthen,

Firstly can you please direct me to where these posts are please?

Secondly, and most importantly knowing her lifes history would shed

light on her strengths and weaker areas, which may assist in making

the correct choice.

Some people on the spectrum prefer in depth help with a greater amount

of information and all things spoken about, whilst others want much less

all depends on what resources they have for managing for themselves emotionally may need support big time for such to get through a day, help to recognise such is all part of their difficulties but should be programmed/tabled into the course work with tutor recognition of such to make reasonable adjustments to aid her and to give her

knowledge/confidence that help is truely available but let her down once and that

trust will be gone in one go.

Also there needs to be an understanding of a persons physical and mental

energy which sadly to say many persons on the spectrum have not had any

diagnosis/help with, this is one of lifes essentials.

Maur

Hi Maur

The 17 old girl who has posted needs some direct advice I think.  Please will you have a read of the posts and see if you can help signpost her to some support reources that can help her source a decent college that can support her needs?  Does NAS read these posts and can they reply privately to people if they think they can help them?

So it goes on the same way it seems as it has ever been, Mums & Dads unable to get

a diagnosis for their child,being left in limbo being made to feel guilty in attempting to

put pressure on those whom are responsible for such but more likely to be sent away

being made to feel so bad,cause this is what you have produced. My older son is 50 years old this year almost same amount of years as the NAS was first established and I have watched, seen same poor service dished out to so many little ones and felt

the heart break of each family which could and should be made a great deal less if

the General Practitioners referred the child onto professionals responsible for diagnosis

at the earliest possible moment and supported the families, life for them would have more meaning.

The sadness a parent really feels is made and played upon by some very uncaring,

unfeeling people from all walks of life and trying to face this straight on is no easy task for parents seeing for the first time what life is going to be like for them but

more important to them will be how the future pans out for their child with such

people around it's difficult to feel confident for the future.

However, I would just like to say that you must feel confident in knowing that the

NAS are truely there for you and your child and support is there at the touch of

your laptop or phone so use it because it has grown like my son into something

a lot bigger and better,  its your gain.

Kind regards,

Maur

I think the first reply to this post says it all for me! Our six year old son was diagnosed in December and to be honest I was heart broken. But, he has so many wonderful qualities and is such a loving little man, I realise I have much to celebrate. I will admitt I am finding it a struggle to deal with educational issues and to deal with some family members reactions, but every time I feel the challenge is getting on top of me, my son will do something to brighten my day and everything seems a bit brighter! Good Luck to you.

Hi - My son has been going through assessments since he started primary 1, aged 5.  All of the assessments, ed psych, school doc, clinical psych, teachers etc are saying he has Aspergers or high functioning ASD as it is known.  I must admit I have been through a living hell emotionally.  I have had nights where I have sat crying, feeling so isolated.  I understand totally how you feel.  Isolated, alone, not "normal", angry, - the whole range. These are apparently perfectly acceptable feelings to feel.  It is like a bereavement of your hopes and dreams for your child.  Once you have begun to accept things will be different, then you like me will be able to get through the mire of systems and hoops you have to jump through and then eventually end up actually celebrating your childs "difference".  My 6 year old son was able to last month be the finale act in a dolphin show in Tenerife and boy did I cry with sheer joy and happiness at what he was able to do. I had a neuro typical child over for tea the other week and quite frankly I was bored as they did not do anything stimulating or challenging (or talk endlessley about the finer details of the double ended light sabre and which Sith Lords from Star Treck I would prefer to battle).  When my son stripped off down to his undies in our living room and danced his heart out to the Mad Dominicans Latin Dance, having put a teapot cover on his head, this is what makes my life so special and tonight to have him come to me and be given a demonstration of how he can now like spiderman shimmy up the door frame in our bathroom and reach the top without slipping, this is what makes me realise I have a truly gifted child!  Ha ha!  I need to think over the next few years as to how I can home these skills and interests into a tangible job for him when he leaves school, but hey - there is a place for everyone in life.  Keep having your cries but never forget to laugh.  He is not ill, just different and truly unique and special - just like my little one.  Feel free to sound off and then when you have a funny story share it with us!  xxx