Bad Days and Good Days.

17/01/14


Today has been a bad day. Bad days are expected to a certain extent with all children, but with an autistic child it isn't once a month as it is with 'normal' children (I use the term normal very loosely, if everyone was the same it'd be super boring!). Luke has roughly 3-4 bad days per week. This can be anything from screaming fits, to meltdowns, to violent tantrums. He throws his toys in people's faces, hits, bites, kicks and spits.
So today, Luke has thrown a die cast train in my face (Ouch!!), trashed the front room twice (once after I cleaned up the first time) and screamed pretty much all day for no apparent reason.


Luke has a lot of bad days, and bad nights too. His sleeping patterns are hit and miss. He's usually in bed between 8pm and 9pm, but quite often is still awake in the early hours of the morning - which means I am too. He's not been to bad for the last week, but it'll go back to normal soon enough.
As I've said before, we're not as bad off as some people are, and my heart goes out to those people. So if you see me, and I look like death warmed up and more bags under my eyes than East Midlands Airport, please don't say how tired I look, or comment on the fact that I have no makeup on and haven't done my hair.


We've been given the choice to medicate Luke when he turns 6, which isn't for another 2 years, but at the minute I don't want to. Life is difficult at the minute, but I don't want Luke to end up like a zombie. He's my baby and I love him just the way he is. Although if I call him my baby he says "No baby, I Luke".


 His speech isn't great, before he started nursery his vocabulary had about 5 words in it. The speech and language therapist has put his speech and understanding at the same level as a 2 year old. We both try our best to understand each other, but if Luke can't understand what people are saying to him he shuts down, and the same if you can't understand him. We have a few tricks to get around it - sometimes if it's clear he wants something but not what it is we'll ask him to show us and that seems to help. I think the key (for me anyway) is to just accept your child for who they are, and try your best. No one can ask more than that.
 Plus, I've started to teach him makaton signs. Which are brilliant! He can now sign, car, bus, tree, aeroplane, bird, drink, toilet, food, please and thank you.

We've been remarkably lucky with the professional side of things. Luke only started nursery in January 2013, and no one knew he had special needs. He's been this way since he had meningococcal septicaemia at 5 months old, so I didn't even know. Having never had much contact with babies or small children (babysitting jobs and hobbies all had children over 8 years old), I didn't really notice that he was different. We missed his 2 and half year review with the health visitor because of a bereavement in the family and never had another appointment, so when he went to nursery they weren't prepared for his additional needs. On day 2 of being at nursery the SENCo (Special Educational Needs Coordinator) took me to one side and said "There's something not quite right with your son", which immediately got my back up. I don't know how I'd begin to tell someone that I think there child is 'different', but that would definitely not be the way!
I phoned our GP and made an appointment for the following day, we were then referred to the paediatrician and health visitor.
Luke needed 2:1 support at this point, but at the minute he seems to be doing well and has 1:1 support and is in a group at singing and story time.
Within 3 months, we had an appointment with the paediatrician and he was going to get reports from other professionals before making a diagnosis. Skip forward another 3 months, after having blood test (in case it was a genetic thing), seeing speech and language therapists, the educational psychologist and the health visitor, we had a diagnosis of ASD (Autism Spectrum Disorder). We now have a statement of educational needs (which is needed to get into special schools) and a placement at an extremely good school which specialises in autism, and he starts in September. Other people haven't even had their statement yet, so we are incredibly lucky that it has all been moving so quickly.


The school we have chosen is a mainstream school, but has incredible special needs programme. They try to put the 'special' children in with the mainstream children where possible so that they are pushed to achieve - but in a nice way. So, if Luke is particularly good at maths, he will be in the mainstream classes with the mainstream children, but will be in The Arc for the other lessons.
Luke is a bright boy, and so I think he needs the firmer route of education. When we were looking at schools for him we went to our chosen school and another which was purely for disabled children. Whilst the other school was amazing, it had a higher budget, more resources etc. the lady that we saw said that a good day for them is when the children acknowledge they are in the same room as them. So that wasn't a fit for Luke.


I am truly grateful for the help Luke has received, and also as ever to Fiona for all you have done for us both.


Please, remember that people aren't always what they seem on the outside. An age old lesson we were all taught as children - never judge a book by it's cover. And 'if you have nothing nice to say, don't say anything' seems pretty appropriate too.