Samuel and Me - Part 1

Samuel is my step-son, he is 9 years old and he has a disability called 22q11 deletion syndrome.

This to you and me means that Samuel is missing a tiny piece of Chromosome 22.  Just by this tiny piece missing the list of health and learning problems is massive.  22q11 is the 2nd most common chromosome syndrome after Downs Syndrome, but unlike Downs Syndrome no two children with 22q11 have the same symptoms.

Here are just some of the problems Samuel has; Sub-mucous cleft palate, as to which he has had two operations; speech and language difficulties; short stature; poor muscle tone; he has a few tiny different facial features to you or me such as slightly more than normal sticky out ears and almond shaped eyes; Samuel is also behind with his education and although he is now in Year 5 his learning capabilities are I would say anything between Year 1 and 2 equivalent; Samuel has behavioural problems and this can range from simply not listening all the way up to showing violence so both ends of the spectrum; Samuel also wets the bed and this is due to Samuel's brain being unable like me or you to switch on the I need a wee button.  On top of this he is now extremely difficult to settle to sleep and often awake until 10-11pm, but once asleep would sleep through a bomb blast so this does not help.

So there is just a small starter to what this remarkable little man has to deal with on a daily basis.  Now I am going to share with you my story of my role as a step-dad to Samuel, a young boy with a disability just getting by day by day.  This is my post on how truly difficult at times it can be and how we struggle every day with what Samuel throws at us as a family.  Also with me being Samuel's step-dad.  No two days are the same with Samuel, or me come to that.  I am not ashamed to admit I so often fall into the all to familiar trap like so many people and when Samuel does something wrong my first instinct is to bawl and yell and go mad at him just as if he was a normal 9 year old.  My reason being unless you know Samuel you could be mistaken for looking at him and thinking he looked normal.  Well most of Samuel's problems are in his engine room, his Brain.  He operates in a totally different way to you and me.

So I shall take you back to the start and share with you my ups and downs of life with Samuel.  I will be blogging in several parts because I find this heart wrenching.  I will be truthful and hopefully just give an eye opener and a small bit of help to any other step parents out there, be it of a child with a disability or a child with none.

When I was in the early stages of talking to my now wife, Karen, one thing she asked of me was to take a small read on 22q11 as she informed me her son had this disability.  Well as you know so many people struggle at the thought of having somebody elses child/children in their lives let alone a child with a disability and I feel everybody operates on a different level.  My first thought was yes of course I am going to Google and have a read on this condition as I had to admit I had never heard of it (now I'm nearly as expert as Karen).  Well what a read and it seemed I was quite natural at taking quite a lot of knowledge on board, and informed Karen that I had read up on 22q11.  She was truly touched that I had taken time out to even read up on this.  Anyway things progressed and we had a first date (previous post) in our lovely petrol station, and following that Karen gave me the thumbs up and we arranged a second date.

It was Karen's weekend with Samuel (he has every other one with his dad) and I said this was fine.  So I turned up on the Saturday morning to pick up Karen and Samuel (the borrower).  I was bricking it and I have no disability, so just what was going through Samuel's mind I will never know.  Anyway, when Samuel said hello to me it quickly became apparent that Samuel, considering he was 5 years old, was very difficult to understand because of his speech difficulties and I realised I was going to have to quickly tune into him.  Now the worst thing in the world you can do is poo poo a child or adult with speech problems by just nodding your head and saying yes to anything, it is so much better asking a few times until you understand and it also helps to tune in to what is being said.  So, our first date with Samuel in tow was a trip to Poole Park where there is a play area call Gus Gorillas.  We stayed there a while and let Samuel gallop about for a bit whilst we had a hot chocolate.  We then headed off to a Harvester restaurant in Bournemouth and this is where I had my first insight into Samuel's behaviour.

Karen had brought along some toy soldiers to keep Samuel out of mischief.  We had a lovely meal and had asked for the bill.  We had decided to go halves and as Karen got her purse out Samuel snatched the money and started dashing about, close to us but not close enough to catch (slippery little eel), after managing to finally taser Samuel and ground him we paid and left.  Now this was just a tiny insight and start to my chapter in life with Samuel there is so much more to come but this will do as a start so please read and hopefully I can give you an insight into mine and Samuel's life together.  What you have to realise is that Samuel, just to get by each day, has to put in a months worth of effort, so please come back and read part 2.