Cars!

Since a very early age, Reuben has had a love of cars.

From around 1 year, Reuben had the "whizz around car garage" from ELC which came with chunky coloured cars that had magnets that allowed the cars to connect together. Reuben played with these all the time, lining them up and parking them in rows etc.

At around 3/4 years Reuben moved on the the matchbox cars. He has millions of them and will play for hours with them. He now has a big car garage with a giant sized car mat in his room and will spend hours at a time playing with them. Reuben also like to line the cars up in front of everyones bedroom doors (so we have to watch out when we come out of our rooms)

Now, at the age of 6 years. Reuben has become even move fascinated with cars, especially "real" cars.

He knows a lot of the model names for the cars and remembers models of cars that family members have got and had in the past.

In fact, I would go so far as to say Reuben is quite obsessed about the different models of cars.

Most average 6 year old boys are happy to play with any toy car but for Reuben it has to have the name badge on the front and he has to know what the name of the car is.

As you can probably imagine, buying a new toy car for Reuben can be quite a headache as we have to sift through the baskets of cars in the toy shops, making sure that they have the model badge on them and it is a colour or a model that he wants at that time.

But most toy cars are generalised and are just meant to be just "a car" not a certain model.

Reuben is completely fascinated by Mercedes. That has to be his all time favourite model. He loves the badge design and gets very excited and happy when he comes across one when we are out.

When Reuben spots a Mercedes (which he does quite often) he will happily go up to the car telling us all it is a Mercedes and then stands and looks very closely at the badge. He can stand there for quite sometime, fascinated with this little Mercedes badge. He will then move slowly around the car, inspecting every last inch of it.

This can become quite awkward when in a public place as obviously the car will belong to a member of the public and we don't want Reuben scratching it or marking it in some way. It can take some persuading to lead Reuben away from the car.

Reuben is happiest when we take him to visit a Mercedes car dealership. He can spend hours in there looking at the various models, looking and touching the badges on them and generally inspecting them over.

We often joke to friends and family,  that if they are thinking of changing their car, they should go visit Reuben as he has so many car brochures in his room. There are all kinds of brochures for different kinds of cars. Obviously he has a lot of Mercedes brochures, but there are also, Vauxhall, Ford, Chevrolet and BMW and many others.

Reuben's memory of cars is awesome!

He can remember the model and colour of the car that family members have had in the past.  One example being that my parents had a grey Ford Fusion about 4 years ago,  but Reuben will still spot and point out that model of car  (it doesn't even need to be the same colour) then tells us it is "Nanny's old car".

Reuben's favourite thing to do whenever we have anyone visit our house, is to see what car they have. He is straight out of the door to have a look then is very pleased with himself when he already knows the make of the car. If not, he will ask us and he will then memorise the model until next time he either sees a car like it or that person comes round again.

I can't help but find Reuben's obsession with cars quite fascinating and find the fact they he can memorise models of cars from day to day and way back in the past completely amazing. It just shows that even with his needs, he has the most amazing memory, which can only make me think there is nothing wrong with his cognitive skills. But, it does makes me question weather or not Reuben's car obsession is a form of Autism.

For a while now we have thought that Reuben has autistic tendencies and have mentioned it numerous times to various professionals at the various appointments we have. At the moment their views are that his global development delay may be the reason for his certain behaviour.

My question is....if that is the case then why did my other children not behave this way when they were at that stage of development????

Just not listening...

I think this will be more of a frustrating rant rather than a blog post...so apologises!

I am starting to get a bit fed up of seeing various professionals, outside agencies about the problems we are having with Reuben and nothing being done or put in place for him (and us)

Today we had an appointment with Reuben's paediatrician. We see her around every 3 months.

Every time we have had an appointment with this doctor, we are always still waiting 1-2 hours after our appointment time as she never runs on time, so today was no exception. Once in with the doctor, she spends all of 10-15 minutes asking us where Reuben is at, what has been happening, how different appointments have gone etc etc.

I can't help but sit there and think..

1 - Is the information from his various appointments not in his file?
2 - If so, then why have you not made a point of reading it before our appointment?
3 - Finally, you are the professional, is it not your job to give us some feed back/information/help?

After spending the majority of our allocated time with her explaining what has been happening, she sits there making notes, nodding and making incredibly irritating "hmmm" noises.
At the end of the appointment, she fills out a form for us to come back in another 3 months and says, "well, lets see how he gets on and I will see him again in 3 months".

A couple of weeks after our appointment, we will receive a letter from her, detailing all that was discussed at the appointment. WHY???? I was there!!!!!

As I have already mentioned in a previous post, we are having trouble with Reuben going to sleep at night. This has been going on for about 3-4 weeks now, and has even progressed to him getting up at 4am, shouting "morning" at the top of his voice. Reuben is getting more and more tired in the day, not listening and his concentration is not as good as it usually is.

So far, the paediatrician has no answers or solutions for us. Her words were today, as there have been no major changes to Reuben's life and he has not been poorly, She does not have a clue what is going on. The same goes for the lady from CAMH's. Her view is that, if Reuben is not causing any disruption in the house or to any other people and he is safe, then let him get on with it, and he will soon wear himself out.

Well. the fact of the matter is...he is disrupting our house. My eldest daughter is currently doing her exams at school, my middle child also has tests at school and my husband is working from home and studying for his PhD. With Reuben shouting, banging, "fixing" things etc nobody can get anything done. As well as me that spends the evening running up and down the stairs trying to get him to go to sleep.

Along with bedtime being a nightmare, Reuben's behaviour has become more challenging over the last few weeks.

Every day when I pick him up from school, his 1-1 informs me that he has been quite disruptive and has had to spend some time out of the classroom in time out. When they try to correct him, he finds it funny and laughs
.
We have this "silly" behaviour at home too. Along with the tempers of banging his head against things, biting himself or attacking one of us.

When we try and talk to Reuben of even shout at him for this behaviour, he thinks it is hilariously funny and laughs. No punishment works.

We have tried taking his favourite toy away, having a "sad mat". distracting him etc and nothing works. Yet when we try to explain this to the various outside agencies/professionals we get greeted with a smile and the old excuse "he has development delay which maybe the reason for his behaviour", or "he is probably just testing you and trying to find the boundaries".

I am now at my wits end and do not know how long I (and my family) can go on like this. But what can I do,  where can I go?

I suppose the only solution is to keep going. At the end of the day, Reuben is my son, not just an NHS number.

Sleep...or lack of it!

Well, another evening of Reuben deciding that bedtime is going to be a time for him to turn hyper-active!!

Reuben has always had a very structured bedtime routine...

6.45 - Bath time
7.00 - Snuggle in Mommy and Daddy's bed to watch his programmes, usually Ben and Holly or Peppa Pig.
7.30 - Toilet, into bed for a story and then sleep

Since Reuben has been a baby, this kind of routine has been in place. After a cuddle and saying "night, night" he will snuggle down and go to sleep.

However, for about 2 weeks now, Reuben is quite happy to tear around the upstairs of the house, shouting and fetching various toys to put into our bed. When it comes to story time, he spends it wriggling around for the entire time like he has ants in his pants and not having any interest in the story at all.

When lights go out, Reuben decides that that is his cue to start playing and making as much noise as he possibly can.

We have done all the usual tricks, for example, black out blind, increased his bedtime by half and hour, brought him a night light and keep putting him back into bed every time he gets up. None of which are making a blind bit of difference. 

Removing the toys from Reuben's bedroom is not really an option as his bedroom is the length of 2 garages and it is full of toys!

Reuben doesn't have any sugary snacks or drinks before bed and we try to keep the house nice and calm beforehand.

One professional involved in Reuben's care has said,  that it wouldn't hurt to let him get on with it as he isn't disrupting the rest of the house and he will soon wear himself out and go to sleep. Besides which, he has a safety gate at his bedroom door which means he cannot run riot around the house.

I have to disagree with this method as he is starting to disrupt the house. My 9 year old daughter cannot get to sleep when it is her bedtime at 8.30pm due to Reuben usually playing on his electric guitar,  singing or "fixing" things.

Also, my husband and I are unable to have a relaxing evening as it is spent going in and out of Reuben's bedroom to turn his big light off and put him back into bed!!

Lastly, Reuben's night time adventures are now affecting his school day. He has become very disruptive and silly every afternoon.
The teachers are finding it hard to control him, get him to do his work or listen, as every time he gets corrected he find it extremely hilarious!

What to do?????

I have spent this morning on my laptop, looking up various parenting sites to find advice on such a matter.

I have 2 daughters as well as Reuben and I am a qualified nursery nurse so the sleeping techniques I know are for younger children. So, the whole going into the bedroom and putting him back into bed without talking just simply doesn't work. I think he is basically too old.

Whilst on my laptop, I came across some information regarding ADHD. Reading down this list of symptoms, I was quite surprised at how many Reuben does/have. Which leads me to think this is a definite avenue for investigation.

We have an appointment with Reuben's paediatric doctor next week so I am going to mention it to her, maybe get some observations organised.

So for now, our evenings will be spent sitting on the landing, getting up every minute or so to put Reuben back to bed!!!

Here goes...

Hi there!

This is my very first blog post!  In fact, my very first blog at all, so here goes...

This blog is to share with other people what it is like living with my son, Reuben.

Reuben is 5 years old (will be 6 on Friday) and he has various needs. He does not yet have a diagnosis which makes every day life with him a challenge. Alot of professionals ask me why I need a diagnosis, and as a Mom I "just need to know".

I also want to know,  as the help and assistance we receive is quite varied and muddled which makes things very difficult.

Medically, Reuben has bi-lateral Ptosis, bi-lateral moderate hearing loss, global development delay, umbilical hernia, speech and language delay, asthma, eczema and has autistic tendencies. 

Along with all that he is being investigated for a genetic disorder.

So life with our "Roobs" can be a roller coaster of emotions each and every day. Which is why I have started this blog as it can sometimes be overwhelming, scary, frustrating and lonely living in Reuben's world.

I hope that from this blog, I can find advice, help other people going through a similar situation and maybe even find some answers!