It's not what you know, it's who you know!

Since forever, I have been searching for answers to Reuben's diagnosis.

Reuben was referred to the Genetics team when he was a few months old and the words that the doctor said on that first appointment will always ring in my ears like they were said yesterday..."we may never find a name for Reuben's condition, it can be like looking for a needle in a hay stack"

Where do you go from there? what do we do? How do we react? but most of all, what does the future hold for Reuben?

Ever since that day, I have been on my own personal quest to find a diagnosis for Reuben. I have joined various group/charities to find information and support.

One charity I joined is called, Unique - Understanding chromosome disorders.

They have been brilliant, especially as Reuben doesn't have a diagnosis. I receive a quarterly news letter and know that I can get in touch with them whenever I need some information or advice.

Each time my quarterly news letter comes through the letterbox, I find myself trailing through the various articles that other families have written about their child with a chromosome disorder. I look at all the photographs of the children to see if they have the same visual appearance as Reuben. I then go on to read their articles to see if I can find some similar behaviour trait or medical conditions that may or may not be the same as Reuben.

Unique relies on families writing  articles about themselves or their children (explaining where they are at and what tests etc they have had done) to make their news letter. I have been meaning to write an article about Reuben and all that he has going on for a while now but never seem to have the time (I think it would end up being a double page spread)

Maybe one day, I will sit down and write it all out and then someone else may see it and compare their child to Reuben just as I have for the past few years.

Another charity I have joined (more recently) is SWAN UK.

It was like a breath of fresh air, reading the posts that the various Mom's and dad's had posted about their children.  More importantly, they were all saying the exact same things that I had been thinking for years. The fact that they feel unsupported, doctors don't seem to be interested as they have no clue why our children are doing what they are doing.

Through SWAN UK, I can post my worries and my queries and know that every time,  more than one person will reply with help, advice, information or just a friendly word to make me feel better.

It was on SWAN UK that I have found out various conditions that I think maybe Reuben has.

One condition is Sensory Processing Disorder...

Reuben never sits still, not for one minute. Even when he is engrossed in an activity, he will be constantly moving, whether that be shuffling around, kicking his legs, waving his arms or just chattering away in gobbledygook.

These symptoms can be mistakenly diagnosed as ADHD.

From exchanging post with a few people on SWAN UK, I have found out that Reuben would need an OT (Occupational Therapist) to diagnose this and support him with it. But, Reuben got discharged from his OT after 2 visits, so no longer has one!

I find it highly frustrating when I have to find out about these conditions from other parents, charities, web sites and not the professionals involved in Reuben's care.

What exactly do these so called doctors do all day. I mean, I can stumble upon this condition, compare Reuben's behaviour to the behaviour shown when having this condition and then find out strategies to help Reuben deal with it. All without a doctors intervention (not to mention wasted time waiting in their clinics)

I have days where I do feel like phoning certain professionals involved in Reuben and basically discharging him from them. Why should I sit in their clinics for hours on end to have them tell me they will review Reuben in a couple of months, why should I put up with them seeing Reuben as a just one more NHS number to deal with when I can just as easily find the information out myself along with strategies to help Reuben.

But, I will carry on my quest to find Reuben a diagnosis. It may not happen straight away but at least I feel like I am taking a pro active approach to helping my son.