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.
Friday 14 June 2013
Tuesday 11 June 2013
Sleep at last??????
After an agonising 5 weeks of Reuben staying up very late, disturbing his siblings and my husband and I not having any "down" time in the evenings, I took the decision to remove all of the toys from Reuben's room.
Harsh..I know!
As the endless sleepless evenings have gone on, I couldn't help but think there are just too many toys in his room. It resembles a play room rather than a bedroom.
So, last Thursday I started my quest to take all the toys out and store them else where (some in my living room, others hidden) I won't pretend it wasn't hard. In fact, it was heart breaking!
The more toys I moved, the more upset I became. I couldn't help but think that Reuben's room was starting to resemble a prison cell. With just his basic furniture and his books, it looked completely bare and lifeless.
I was dreading Reuben returning from school that afternoon to be greeted with this blank, dreary room.
My husband and I decided that we would try this route for a couple of nights and we would review it on Sunday.
As it turns out, Reuben wasn't really that upset by the sudden disappearance of his toys. Obviously he came running out to tell me that his toys were gone, saying "no more toys", "toys have gone".
I explained to Reuben that toys are for playing with downstairs and that his bedroom was for sleeping. He seemed to except this without any problem, which with Reuben was a shock as he hates change.
My husband and I were left gob smacked on the first night, as Reuben went to bed (usual bedtime routine) and feel asleep before 10pm. In fact, he was fast asleep at 8pm....Result!!!!
The next couple of nights followed suit. Reuben went to sleep quite nicely, with no problems, shouting or playing and has gone straight to sleep. That was until last night, when Reuben decided to read his books until 9pm.
I am going to carry on with the "no toys in bedroom" strategy for another couple of nights. I know 9pm is late, but its a massive improvement compared to 10pm and the fact that he is sitting quietly reading books and not running around his room like a nutter, making as much noise as he possibly can is something I think I can deal with.
It still doesn't change the fact that I think his bedroom looks like a bare, unloved cell. And, I still have this huge feeling of guilt for taking his toys away, but I suppose it is a compromise to getting our evenings back and Reuben being more settled at night and not getting overly tired due to the lack of sleep.
My living room is now full of toys, I was hoping that we as a family were past this point where our house resembles a family with a load of toddlers, so it is something that will need to be addressed in time.
So, the question is...Sleep at last??? Only time will tell I suppose.
Harsh..I know!
As the endless sleepless evenings have gone on, I couldn't help but think there are just too many toys in his room. It resembles a play room rather than a bedroom.
So, last Thursday I started my quest to take all the toys out and store them else where (some in my living room, others hidden) I won't pretend it wasn't hard. In fact, it was heart breaking!
The more toys I moved, the more upset I became. I couldn't help but think that Reuben's room was starting to resemble a prison cell. With just his basic furniture and his books, it looked completely bare and lifeless.
I was dreading Reuben returning from school that afternoon to be greeted with this blank, dreary room.
My husband and I decided that we would try this route for a couple of nights and we would review it on Sunday.
As it turns out, Reuben wasn't really that upset by the sudden disappearance of his toys. Obviously he came running out to tell me that his toys were gone, saying "no more toys", "toys have gone".
I explained to Reuben that toys are for playing with downstairs and that his bedroom was for sleeping. He seemed to except this without any problem, which with Reuben was a shock as he hates change.
My husband and I were left gob smacked on the first night, as Reuben went to bed (usual bedtime routine) and feel asleep before 10pm. In fact, he was fast asleep at 8pm....Result!!!!
The next couple of nights followed suit. Reuben went to sleep quite nicely, with no problems, shouting or playing and has gone straight to sleep. That was until last night, when Reuben decided to read his books until 9pm.
I am going to carry on with the "no toys in bedroom" strategy for another couple of nights. I know 9pm is late, but its a massive improvement compared to 10pm and the fact that he is sitting quietly reading books and not running around his room like a nutter, making as much noise as he possibly can is something I think I can deal with.
It still doesn't change the fact that I think his bedroom looks like a bare, unloved cell. And, I still have this huge feeling of guilt for taking his toys away, but I suppose it is a compromise to getting our evenings back and Reuben being more settled at night and not getting overly tired due to the lack of sleep.
My living room is now full of toys, I was hoping that we as a family were past this point where our house resembles a family with a load of toddlers, so it is something that will need to be addressed in time.
So, the question is...Sleep at last??? Only time will tell I suppose.
Sunday 2 June 2013
Birthday Parties...
I have always loved birthday parties, whether they are my own or my friends.
Reuben however finds them quite a challenge.
I think he likes to go to them if they are his friends from school, otherwise he hates them.
Last week, we got invited to my husbands Aunt and Uncle's silver wedding anniversary party. It was held at a social club and they had a singer and a disco.
I had already prepared Reuben for the party by talking to him about it a few days before, telling him what would happen when we were there. So it was quite frustrating when we were trying to get ready and Reuben was doing everything he possibly could to not get ready.
After his shower, he ran around the house naked refusing to get dressed, then when we did finally get clothes on him, he decided he wasn't going to wear that particular outfit and put on one of his Dad's old work shirts with a fireman tabard on top and a bag around his neck!
Once we sorted him out again (what seemed like the 10th time) Reuben decided he was going to sit in the living room and play Lego and not get in the car.
It took both my husband and I to carry Reuben into the car along with his bag of stuff. This would be the start of Reuben's protest into attending the party.
Once at the party, Reuben was quite well behaved. He played with some of the other children that were there and then came and sat by us at our table. This lasted for all of 20 minutes!
Reuben decided he was going to start moving chairs around, give out his toy cars to random party guests and attempt to put his face in one of the deserts.
We finally got Reuben to sit down and play on his Leap Pad for a while but that too lasted around 20 minutes as he then decided he would sit on the dance floor and tear up a polystyrene plate into pieces.
We ended up leaving the party after a couple of hours. As soon as we said to Reuben..."shall we go home now?" he jumped up, shouted "yes" and started for the door. A clear indication that he really truly didn't want to be at the party form the start.
This weekend however, was his school friends birthday party and all the children had to go dressed as superheroes.
Reuben was quite excited about going to the party and seeing all of his friends, especially as it had been half term and he hadn't seen them all for a week.
Getting ready for the party was a complete nightmare. Reuben ran off once out the shower and decided to put his pyjamas on and play in his room.
It took around half an hour to get his Buzz light Year costume on and after having it on for 5 minutes and me turning my back, he had got changed in to his Halloween skeleton costume and was in the garden lying on the floor!!!
Anyone would think he didn't want to go to the party, but what do you do???
I mean, I know he will love it once there and I really don't like letting people down at the last minute but is it just making more hard work for myself by taking him???
In the end, I got Reuben ready, put him straight in the car and belted him in so he couldn't run off or get changed..harsh, I know.
Once at the party, Reuben was off outside playing alongside all his friends.
Alot of the Moms were inside all talking amongst themselves but I like to keep an eye on Reuben as I never know what he will get up to or how he will react in certain situations, he also has not sense of danger at all.
As I stood there watching, I noticed that Reuben wasn't actually playing "with" any of his friends and that he he was quite happy running around by himself with just himself for company.
At one point, Reuben was sat on the grass by the slide pulling up the grass and tipping it all over himself, just watching all his friends running around and playing. This really did break my heart as his facial expression was that he didn't quite know how he fitted in with them all.
Reuben has some lovely friends at his school, and they all look out for him ad think the world of him. So, when his best friend "Olivia" came over to talk to him his face just lit up. But he still didn't get up and play. He just sat, pulling the grass up and smiled at her. Olivia then went off to play with the others.
Reuben loves his friends, and loves being in the company of them, but he just doesn't know how to play with them, doesn't understand their games and it makes me so sad to see him sitting on the sidelines watching.
Reuben's relationships with other children has greatly improved over the past year.
A year ago, Reuben would not have anything to do with another child, not even speak to them. Nowadays, he chatters away to them and loves to listen to them talking to him. He even likes other children playing alongside him which is also a big improvement as a couple of years ago he would attack any child that came too close to him.
I just hope that as time goes on, he will develop more confidence and understanding of the games that his peers play and that he will join in.
As for future parties...I think we will continue to go to his friends parties but will probably spare him the frustration and upset of taking him along to other parties.
Reuben however finds them quite a challenge.
I think he likes to go to them if they are his friends from school, otherwise he hates them.
Last week, we got invited to my husbands Aunt and Uncle's silver wedding anniversary party. It was held at a social club and they had a singer and a disco.
I had already prepared Reuben for the party by talking to him about it a few days before, telling him what would happen when we were there. So it was quite frustrating when we were trying to get ready and Reuben was doing everything he possibly could to not get ready.
After his shower, he ran around the house naked refusing to get dressed, then when we did finally get clothes on him, he decided he wasn't going to wear that particular outfit and put on one of his Dad's old work shirts with a fireman tabard on top and a bag around his neck!
Once we sorted him out again (what seemed like the 10th time) Reuben decided he was going to sit in the living room and play Lego and not get in the car.
It took both my husband and I to carry Reuben into the car along with his bag of stuff. This would be the start of Reuben's protest into attending the party.
Once at the party, Reuben was quite well behaved. He played with some of the other children that were there and then came and sat by us at our table. This lasted for all of 20 minutes!
Reuben decided he was going to start moving chairs around, give out his toy cars to random party guests and attempt to put his face in one of the deserts.
We finally got Reuben to sit down and play on his Leap Pad for a while but that too lasted around 20 minutes as he then decided he would sit on the dance floor and tear up a polystyrene plate into pieces.
We ended up leaving the party after a couple of hours. As soon as we said to Reuben..."shall we go home now?" he jumped up, shouted "yes" and started for the door. A clear indication that he really truly didn't want to be at the party form the start.
This weekend however, was his school friends birthday party and all the children had to go dressed as superheroes.
Reuben was quite excited about going to the party and seeing all of his friends, especially as it had been half term and he hadn't seen them all for a week.
Getting ready for the party was a complete nightmare. Reuben ran off once out the shower and decided to put his pyjamas on and play in his room.
It took around half an hour to get his Buzz light Year costume on and after having it on for 5 minutes and me turning my back, he had got changed in to his Halloween skeleton costume and was in the garden lying on the floor!!!
Anyone would think he didn't want to go to the party, but what do you do???
I mean, I know he will love it once there and I really don't like letting people down at the last minute but is it just making more hard work for myself by taking him???
In the end, I got Reuben ready, put him straight in the car and belted him in so he couldn't run off or get changed..harsh, I know.
Once at the party, Reuben was off outside playing alongside all his friends.
Alot of the Moms were inside all talking amongst themselves but I like to keep an eye on Reuben as I never know what he will get up to or how he will react in certain situations, he also has not sense of danger at all.
As I stood there watching, I noticed that Reuben wasn't actually playing "with" any of his friends and that he he was quite happy running around by himself with just himself for company.
At one point, Reuben was sat on the grass by the slide pulling up the grass and tipping it all over himself, just watching all his friends running around and playing. This really did break my heart as his facial expression was that he didn't quite know how he fitted in with them all.
Reuben has some lovely friends at his school, and they all look out for him ad think the world of him. So, when his best friend "Olivia" came over to talk to him his face just lit up. But he still didn't get up and play. He just sat, pulling the grass up and smiled at her. Olivia then went off to play with the others.
Reuben loves his friends, and loves being in the company of them, but he just doesn't know how to play with them, doesn't understand their games and it makes me so sad to see him sitting on the sidelines watching.
Reuben's relationships with other children has greatly improved over the past year.
A year ago, Reuben would not have anything to do with another child, not even speak to them. Nowadays, he chatters away to them and loves to listen to them talking to him. He even likes other children playing alongside him which is also a big improvement as a couple of years ago he would attack any child that came too close to him.
I just hope that as time goes on, he will develop more confidence and understanding of the games that his peers play and that he will join in.
As for future parties...I think we will continue to go to his friends parties but will probably spare him the frustration and upset of taking him along to other parties.
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