Friday, 20 November 2009

Love of routines and autism

I have noticed throughout my sons life, his love of routines. Autism and routines is usually the norm, some children have more than others. Routines for getting dressed, brushing teeth, waking up. The list CAN be endless and he will gain or drop routines with time. Some routines can be extremely time consuming especially at times when we need to rush - the morning before school for example - the wake up routine goes something like this.......I rouse him by gently shaking his shoulder (which often takes along time as he has terrible sleeping issues and is extremely tired in the mornings). I then have to get a warm flannel, which MUST have a nice smelling body wash on it, if it hasn't and smells of nothing, all hell breaks loose with tantrums, aggression and crying. I then have to gently wipe his face with it. I get a bouncy ball which has a picture of an eye on it and I have to speak to my son, through this ball (in a voice similar to Marge Simpson I must add!) and say 'good morning, it's time to wake up' etc. and sometimes he likes me to sing a song 'through it' as well. I then have to get his school clothes and after getting his P.J's off, I have to start dressing him whilst he is laying on his bed, saying 'right leg, left leg', whilst putting on his trousers socks  and the like. Even when in his uniform, my son (LL) often asks me 'where are we going?', and I have to say 'school'. So that is just a basic outline of his 'wake up' routine. Some mornings it runs smoothly, some others it does not. It can all depend on how tired and grouchy he is and if he has had a spate of bad nights. When he is grouchy, he seems more sensitive to his routine being 'perfect'. The thing is with autism and routines, well in my case anyway, I know it gives LL a sense of security I did completely stop all routines a couple of years ago as it got to the point where I was fed up with the routines, but it resulted in absolute pandemonium.His behaviour really suffered and he was extremely stressed so I started them all back up again. He will refuse to eat a meal if I cook it too soon after his return from school. He is not genned up on reading the time, but he seems to be able to judge the length of time he has been  back from school and if I cook him a meal, he will refuse and say 'it's too early,it's not dinner time, I haven't been back from school long'. So the meal just sits all alone waiting for the right time to be eaten. In the beginning, I wondered why he got so distressed, but over time, as a parent you get to know your child's wants and needs - the same as a parent of an NT child, and you adapt your life around their special needs - you have to. It is very hard and extremely tiring but the more hard work I have put in with my son, the more rewards I get so to speak. So say if I can't be bothered with the routines, I get the bad behaviour...but if I stick to the routines, my son is happy. And this is enough a reward in itself. I do not like the thought of my child feeling anxious. With his autism, he suffers extreme anxiety and is now seeing a psychologist to help with this. Even on journeys to school, curse me down if I take an alternate route son bombards me over and over with 'where are we going?' 'this isn't the right way' until we end up back on the same route. The thing is, if you look at it from an autistic view point, you can fully understand the anxiety of  this quick route detour; the child knows he is going to school, you have told the child he is going to school,the child knows the route to school. If that route is broken, then the thought of school is broken too. This is where the anxiety kicks in as the child now thinks he is going somewhere other than where he was told. They feel anxious as autistic children need to know exactly what is happening. And another thing I have found is that if something crops up and a routine has to be altered, even if the child does not show the anxiety at that moment in time, it can be a backlash at a later point in time. My son is typical of this; he can hold onto things that have stressed him  and 3 weeks later, he will have a complete meltdown over it. So I tend to try and be as regular and as stable for my son as much as I possibly can.

Thursday, 19 November 2009

At the time of Autism diagnosis

 After I had had my son;Little Legs (LL throughout this blog) referred to the local children's centre, it was a complete uphill struggle to get a diagnosis. I had heard that the local authority were not handing out dx's due to funding. Whether or not this was true is another matter. But they told me he was a perfectly 'normal' child. I thought it was absolutley ridiculous and asked for a second opinion. I had to wait a long time but saw a Guys expert in the field so it was worth the wait. The thing is in my experience, the longer you wait for a diagnosis (dx) then the more turmoil you are put through. I felt like I was going crazy not knowing what was wrong with my child. It is such a harrowing time and feel that issues like this should be looked into with ease rather than having to fight this awful system we have here in GB. Anyway, we visited Guys Hospital and I was told LL  has high functioning autism and she told me it was 'absolutely ludicrous how it wasn't spotted before'. I asked the Professor from Guys, if it were the same as Aspergers and she said 'no'. After all the things I have read saying that HFA = Aspergers I was baffled. She told me that the autism was severe but he had normal cognitive level shown by a WISC IV assessment. She also said because of his lack of speech when he was young and the cognitive result, she said he is high functioning AUTISTIC and not aspergers. She told me that IQ is just a tiny measure of someone's adaptive functioning and it does not represent the level of the adaptive functioning impairment.  At first I didn't understand, but as time has gone on I really do understand what she meant. My son really seems more classically autistic to me but does talk now but he also has a severe expressive language difficulty, and is agenda based talk only. Some days he will not talk to me at all - he doesn't 'do chatting'. When I hear other children asking their mums/dads something and having a natter, they do not realise how lucky they are to have their child chat to them.  He really does not like to play with other children and keeps himself distant. He really has extreme difficulty in social situations and has severe impairment of social functioning. I attend the local autistic groups with him and compared to the other children there he really does struggle. I am not saying the other children do not struggle, but LL seems to be much worse. I regularly leave the groups early due to this. When I look at some of the children with aspergers, I really can see the difference. I found an article here that explains it to a tee. My son is now 7 and I still have to help him with toileting, getting dressed, eating etc. So despite his normal IQ, he struggles with every thing in life, this is where the adaptive functioning comes in! He has been placed in a new Specialist Unit and even they told me to keep him home when he is tired or in a bad mood. I couldn't believe this and think it's a disgrace that they cannot cope with my child. I know he has extreme behaviour but it is a Specialist Unit and they,I feel, should be able to deal with things
So from the time of thinking something was wrong with LL (13 mths old) to get a diagnosis (6yrs old) was a complete battle. Why should parents have to go through so much trauma in order to get help with a disabled child. I think it is a disgrace that we have to literally fight for everything.

Tuesday, 17 November 2009

The beginning of our Journey into Autism

In 2002 I gave birth to my wonderful son. He was an absolute delight. Never have I felt the elation of when I first held him in my arms that precious day.All was fine and he was a happy child. He didn't cry much: not much at all. His first Christmas was very strange,he was completely bewildered by it all and I remember thinking to myself 'what is wrong with my son, is he ok??'. I put it down to tiredness. When I was weaning him, he used to gag....I put it down to him not being ready. Then as months went by, despite him being my first child, I knew something was amiss. He found it very hard to look at me, he wasn't interested in the world around him, he wasn't interested in familiar people, he wouldn't respond to his name, amongst others. His sleep patterns completely changed and are still diabolical now. Sleep deprivation is so NOT good!!He also started having extreme crying fits and I couldn't work out why. I felt redundant as a sounds ridiculous to say that I felt unneeded by a 13 month old baby! I cannot begin to explain the pain of having your child not being able to look in your eyes.I had hardly any responses from him and tried desperately to make him giggle and play with me. The basic words he did have, he lost completely at around 13 months old, after which he did not speak. I do remember him chasing me round on the floor in a game, when he was crawling and I cannot begin to tell you of the amazing feeling that that had given me that day.....something I never take for granted any more.
I told my Health Visitor that I thought something was wrong and it fell on deaf ears. I was my instinct as a mother and I really knew something was definitely wrong. I took the matter into my own hands and searched the web. I started reading up on autism and a bell rang immediately. I contacted my local branch of the Autistic Society, they came round to discuss things and they put me in touch with my local Children's Centre. And the story goes from there.........