'I've got Autism' Badges. What are your thoughts please

blue_monkey_2

Hi broclo,

HV - we have moved from that area now to 10 miles down the road, a better area in some respects to be honest as things have moved faster than they did before (yes, really!!). We do not have a HV (he is too old) but someone from a Childrens Centre who comes to see us. To be honest she speaks but nothing really happens. DS was supposed to have follow up to speech therapy but still nothing either.

Doctors - because we are part of a big practice now I think they di not get to know the children, there is no chasing and nothing seems to happen. I've heard that 2 of the 3 paeds at the Childrens Centre are retiring so this is why there is a backload, I am supposed to see CAMHS, the ADHD Nurse - nothing has happened since his 'diagnosis' at all really.

I do understand what you are saying about the SENCO but I still think nothing happens unless you have 'that piece of paper'. For example, the !!! (Autism Advisory Service) will not get involved or help the school until diagnosis has been made. This is because although some schools pick up on it parents are reluctant to get help and so the !!! help the kids without the 'diagnosis' while the kids with one get no help as there is not the resourses to go around. It is all about resources, she told us this at a group we went to last week, they catagorically do not help unless the Paeds has disgnosed something specific such as Aspergers or HF Autism - ADHD does not count.

As an example, another lad in DS class has HF Autism and he copes better than DS (I am friends with his mum) and they are not as restricted socially as we are but because he has that piece of paper this lad gets the help from !!! and they get more money than us (DLA), my son doesn't get anything and is on the lower rate but our life is so much different from theirs and she actually told me that she did not know how I coped day to day. I've not yet applied for statementing because he is (was) only in Reception year and the school have had their own stratagies for helping and they have really worked - just tiny things make all the difference. I am going to see how things go when we go into year 1 but while the school are happy with him then I see no reason for me to go in all guns. This school is great and is very accomodating and the Senco and teacher even accompanied me to the last paed appointment.... however, the next school might not be so this is why I need that piece of paper. I do think it makes a difference - especially when they move from a tiny primary school to a big secondary school.

Lastly - can I ask who you are flying with please, they sound fab!! I never thought about the bulkheads to be honest, that would certainly help as he cannot sit still and yes, kicking the seat is certainly going to be an issue as he cannot keep his legs still, this is why I wanted the 2 sets of 2 seats at the back.

Well, breakfast time and time to get dressed, I love the school holidays, usually takes me a few days to get in gear and we have some 'at home' days and I usually I just do the housework in my PJ's but I have a visitor today!! We have been invited to the Children's Centre as they have lots of free stuff going on in the holidays, also bought a huge inflatable water playpark thing for the garden for the kids to play on in the afternoons, the sun better shine!!

Happy holidays everyone.

ETA. I cannot believe the forum will not let me put A S S so that is what the !!! are. :rotfl:

sarlyka

Hi,
regarding air travel, you might be interested in the Manchester Airport awareness leaflet for adults travelling with children who have autism. I can't add the link here, as I'm not allowed to, but if you google 'autism airport', you'll get through to some of the useful sites.

Errata

Link for the Manchester Airport leaflet

http://www.manchesterairport.co.uk/manweb.nsf/alldocs/4D4CC20F97DD74008025736400407C2E/$File/Airport+Awareness+book.pdf

broclo

BlueMonkey it was easyjet...if they are helpful then the others must be amazing lol

But it was the actual airport that offered the most advice and help

parapusher

I make badges for my autistic son and have sold some to other parents. When he was younger he had "I have autism, please have patience with me". I found it useful, and could see that people read it and took notice. My sons are autistic with severe learning difficulties and are non-verbal. The eldest is now 20 and hates the word autism - but likes to go off on his own for short periods in supermarkets/shopping mall etc. As he has no understanding if a shop assistant/security guard etc needed him to move away from something or some other problem, I have made him a badge that says " if my behaviour causes you any concern please phone .... " and put my mobile telephone number on.
I have also made a badge for parents saying "My child is autistic - I'm doing the best I can! " . This has been very popular, and I wish I had one when my children were small! I make a badge for people, like me, with aspergers syndrome that says "Aspie and proud of it!". So we can all wear a badge in my family!

Vicky123

I think the more obviously autistic a child is will bring an earlier diagnosis, my youngest was diagnosed just before two years old, he is very severe, my oldest was diagnosed at 6yrs he is HFA.
Hate to put a downer on those who are parents of much younger severe children but we are still fighting for a decent education and he is now 12.
Both boys have statements, to this day youngest has only ever had babysitting service under the guise of "school" we are on our third tribunal right now, my experience is dealing with the LEA is more stressful than my sons autism!
Vicky

Breast_Cancer_Survivor

My eldest was diagnosed at 11 despite struggling all the way through school & being labelled as having anger issues, he was even called socially imature by his reception school teacher at the age of 5.

What I don't understand is if it was that noticeable at the age of 5 why it took until the age of 11 to diagnose him.

Luckily he goes to a special school for boys with ASD's now where he is actually getting the support he should of been getting years ago.

I had the same problems when he was young, I had to leave toddler group as he would knock the other children over, all through school he was teased & bullied resulting in HIM reacting & getting excluded numerous times.

I just wish society as a whole would be alot more understanding & accept that everyone is different, especially children.

broclo

Golly vicky and BCS! Sounds like you both have had to really fight hard for your children. I suppose parents now embarking on diagnosis may find waiting frustrating, but at least it seems it is quicker than you both experienced. Then again...I was shocked senseless when I told my grandmother about my ds1's diagnosis. She simply said "Oh yes my sister had that, got locked up in a loony bin, never saw her again, will he got to one too?" After my speech returned at the shock of finding out autistics were sent to 'loony' bins and 'forgotton' and that I was not even aware of her existance(close family too!)I then informed my grandmother that ds1 would not be and that he would live a very full life with lots of help and understanding etc. She then replied "Oh but of course he will not have children, marry or anything, unless of course he mixes with his own kind". No point trying to 'educate' her, she is 72 and thinks of him now as completely brain dead etc.

So yes I guess society still has a long way to go, but golly we have seen a change thank goodness!

Vicky, they are now diagnosing HF at around 2 years these days So thar shows a marked difference in a few years, positive I guess

blue_monkey_2

broclo, it was just 30 years since I was at primary school. We used to have a 'special school' in the village and kids would start my primary school then 'disappear' to the special school. Of course, those schools no longer exist and so our kids have to struggle through - this is why it seems that there are so many children these days with problems. I have no doubts that had that school still been open my sister would have been sent there. My auntie was also in a 'special school' because as a child I remember my nan and mum going to get her. My brother most certainly had ADHD, my younger sister was diagnosed with 'learning difficulties' and had that been today I am sure she would have been dx with Aspergers. As for me - I do *think*& I know what I am, I read books and I think 'whoa' that is me all over, but I guess as adults we learn to deal with things.

I remember this vividly and cringe whenever I think about it now but back then I did not even think I had said anything wrong, why I remember it I am not sure but, I started a new secondary school, I was sitting next to this girl who was big (not obese but she was quite large) and we was in class and the teacher was talking about rice. She said that she had eaten rice and drunk 3 glasses of water, the teacher then said that the rice could swell in the stomach so you should not drink so much water, I leaned over and said to her 'that would be why you are so fat then'. To me I could see nothing wrong and the girl gave me the dirtiest look ever and for the life of me I could not see why as I was pointing out a fact however, it was not the best start at a new school. :o:o

I also remember going to an interview about 14 years ago and when I called the agency for feedback I was told that the MD thought I was 'hiding something as I never gave eye contact'. Now this was never something I had ever been told or thought about but from then on I started to make more of an effort and think about looking at people when I spoke to them - even now I have to think about it and often find an excuse not to look when speaking, it is really hard but clearly I had my own issues too - funny how had I have known that interview could have made all the difference. I was made for that company!!

On my side a lot of my family have ASD's - some diagnosed some not, I have cousins who have children with diagnosed autism (all boys) and in the last generation it was all girls with the condition. There is a lot of self harmers in the family (last generation) and my dad - well, I am not even going there!! He has a LOT of issues!! I do find it interesting that it does seem to run in families and also find it strange that people with ASD are related to others with ASD (has anyone else found this?). We have a lot in this family my husband has a lot in his (not that they would EVER admit that but I know what I can see!!). Yes, 60 years ago the kids were just taken and locked away. 30 years ago they were in special schools mixing with their own 'kind' but getting the specialist help they need. I think that years ago because there was the fear that the kids would be taken and locked away or sent to schools where they stayed and got medical help that there was a reluctance to get help from the midcal proffesion whereas now we NEED the help to get our children through school.

There needs to be a lot of education more than anything else, I agree that the spectrum is broad but there are the same problems - some more severe than others. I also know from my support group that some children with early diagnosis can also have that taken away later on as the children improve. The best we can seek to do is educate some of those people as we go and hopefully expand their minds.

Well, we are off to an art club this morning where I stay with the kids (what am I thinking.....?) so better go and get dressed, sorry for waffling.

blue_monkey_2

PS. It seems my son is currently obsessed with Rollercoasters. He is making rollercaosters, he is drawing rollercoasters, we have a magnetic bracelet that he puts into a shape and shoves under your nose saying 'would you go on this rollercoaster?' He is currently making something our of his Cranium Superfort and is sitting in it. 'Wow' I said 'is that a car?'. Him: 'No, it's a rollercoaster, would you go on this?'. Me: 'Yes of course'!!

He is aching to get on a 'upside down' rollercoaster. He is 5. I think I've got to develop a very stong stomach in the next 7 years!!