So, we finally took the plunge and went on holiday...abroad!
Before Reuben was born, we regularly went on holiday abroad and had a really fab and relaxing time. But, since having Reuben we have been (putting it bluntly) scared.
Reuben is a very complex little boy. He can be very unpredicted in his behaviour which can be highly stressful on both us and him. Routine is a must for Reuben and once we step out of it, our troubles and his begin.
So the very thought of being in a completely different country, having a language barrier and being so far away from home. Not to mention no extra support from family or friends seemed like a trip from hell.
After a lot of thinking and talking, we decided to book a holiday to Tenerife. My husbands parents decided they would come along as well, which made the thought of the holiday a little less terrifying.
Walking into our lovely clean hotel room at midday after being on the go since 4.15am felt fabulous.
We set our cases down, the girls were running around exploring and my husband and I having sat down for a much needed 5 minutes. That was until we looked around to discover, Reuben had disappeared!
That's when we noticed the hotel door standing wide open......
My husband and I both bolted out the door, going in opposite directions and shouting Reuben's name. The girls stayed at the room just in case he was to come running back, they too were shouting his name.
I have never felt so terrified in all my life. My heart was in my throat and I could feel the bile rising. Shouting Reuben's name over and over then listening for his voice whilst running through corridors and up and down steps.
Finally, what felt like a very long time, we could hear him laughing and a Spanish lady talking to him. The Spanish lady turned out to be a cleaner and was trying to ask him where his "Mama" was and obviously Reuben could not understnad a word of what she said.
From that point forward, I don't think I ever fully relaxed in that hotel room. The door would be locked and checked a million times and the pushchair would be put in front of the door. Everyone was given strict instructions to have Reuben in their sights whenever we were in the hotel room.
That first day and the day after, we had to have eyes in the back of our heads. We were on "high alert" at all times as Reuben was like a ticking time bomb, ready to do impulsive things at any moment.
The evening of our first full day, I said to my husband that we should never have come on holiday. I could quite easily have packed our things up there and then and gone home.
As the days went on. Reuben seemed to settle. We got into our own routine and we stayed more or less in the same place by the pool each day.
Reuben loved being able to just jump in the pool and cool off. In fact by the end of the holiday he was swimming really well, albeit with his face in the water and he completely mastered the art of jumping in.
The heat seemed to affect him and make him really tired and drowsy, so walking anywhere became quite a challenge (Reuben is not light). Just the little tasks of going to get something to eat turned into a mission.
The main challenge we had on holiday was the hotel restaurant.
Whether it was the big open space or the noise or the amount of people, Reuben just did not like it!
He would refuse to leave the hotel room in the morning to go to breakfast and we would end up having to bribe him with a cup of tea (his favourite) then sneak food out of the restaurant for when we were round by the pool as he would just refuse to eat.
Evening meals were even more of a challenge as, obviously we couldn't sneak food out. Reuben would full on refuse to go down to the restaurant for dinner and would even have temper tantrums in the hotel room.
Each evening we would have to think of another bribe to get him down there or simply try and distract him by chatting about cars while we walked to the restaurant. But once inside he would be terrible, he really wasn't comfortable there.
I would usually go and get Reuben's dinner first and try to get him settled eating while everyone else went and go theirs. But just as I sat down to eat my dinner, he would have finished his and start to disrupt the whole table. This would be either, banging cutlery on glasses, shouting, banging, throwing his plate or drink across the table or simply getting up and trying o run off.
Between my husband, his parents and myself we had to juggle distracting Reuben or getting his pudding to keep him calm. At some points, I had to leave the restaurant mid meal and take him to the lobby to just calm him and get his attention back.
All in all, meal times were very traumatic for both Reuben, ourselves and probably some other guests sitting by us!
Looking back now, I wished I would have spoken to the hotel staff and explained our situation to see if there was anything they would have done. I am sure we could have eaten out in the lobby or been aloud in the restaurant early before everyone else came in. But hey ho, a thought for next time!!!
Monday, 29 July 2013
Sunday, 21 July 2013
Leaving on a Jet plane...
Well, what a week!
We have just returned home from Reuben's first holiday abroad and I think we did ok.
Our flight to Tenerife was at 7.15am, which meant we had to leave our house at 4.30am. This wasn't as bad as I thought it would be as we just woke Reuben up, got him dressed and went out of the door.
Obviously we had to prepare Reuben beforehand about where we were going, what we were doing and what would be happening while we were away. I think he was fine with it all as he seemed quite happy.
Reuben loved going in the taxi (simply because it was just a different make of car ha) he spent the journey to the airport looking out of the window and telling Nanny and Grandad that we are all going on the aeroplane.
Once at the airport my heart sunk as the queue to check in was massive and the airport was really busy with crowds of people (2 things Reube hates)
Luckily the queue moved quite fast and Reuben only got fed up as we approached the front, by which time he kept sitting on the floor and refusing to get up, which was holding the people behind us up!
Going through security was a bit of a nightmare as Reuben had had enough by then and it was really hard to get him moving. He would sit on the floor and refuse to move, this deemed quite a challenge when carrying my own bags, Pip the teddy and Reuben's hand luggage!!!
I was a bit worried how Reuben would react to going through the beeper machine (don't know the real name ha) but he seemed to cope really well. That might be down to us telling Reuben that Pip the teddy was also going through his own machine to have a special photo taken.
Once through security we had just enough time to grab some breakfast. Reuben was so happy to get his morning cup of tea, it calomed him instantly. I have never seen him enjoy a cup of tea quite like it. Thinking back now, maybe I should have made him a cuppa in his travel cup to have in the taxi. It might have set him up for the day.
We were so lucky with the seats we had on the plane as they were right at the front and had extra leg room.
Reuben coped really well with getting on the plane and letting us put his seat belt on. I gave him a sticker book that was all about aeroplanes and airports so we sat and did this whilst waiting to taxi on to the runway.
Surprisingly, Reuben didn't care at all about taking off. There I was trying to get him to look out of the window as we sped down the run way but he looked straight ahead with is thumb in.
Even as we were up in the air and the clouds were visible from the windows, Reuben still did not seem to care or notice. It was as if he had gone into his own little world to protect himself from this strange new situation!
Once the seat belt sign went off, we were able to get Reuben's bag down from the locker and get his things out. He played for a while on his Leap pad, then got his cars out.
As we were half way through the flight, Reuben got a bit fed up. Thankfully we had a back up plan!
My husband had put quite a few episodes of Peppa Pig and Ben and Holly on his ipad. Reuben loves these programmes so we hooked his hearing aids up to the ipad using the special adaptors. These are better as the sound goes straight through to his hearing aids whereas normal headphones don't.
Reuben sat watching this for a good while and it seemed to calm him down a lot ( a very good idea by us ha)
Once the seat belt sign came back on and we had to tidy Reuben's things away, he got agitated again. This was simply because he didn't want his seat belt back on, he liked the freedom of standing by his chair and playing.
So, my husband and I spent the whole time until we landed holding his seat belt as Reuben had figured out how to undo it. This, he did not like at all and so we had a quite a temper as we came into land. The sound of Reuben screaming and making a whole lot of noise could not be helpful for any nervous travellers on our plane...Sorry!
Our next challenge was the dreaded wait for our luggage. Reuben had had enough by now and really didn't want to do anymore waiting.
Luckily we got our pushchair quite quickly and he was able to sit in that and cuddle stinky blanket.
Once on the coach, we had to do the dreaded waiting thing again which meant Reuben was now doing anything he could to be disruptive and as awkward as possible. He was standing on the seats, shouting, pulling his Nanny and sisters hair and generally being a pain in the bum.
As soon as the coach started moving he was fine and sat and watching everything from his window.
Now for the holiday....
We have just returned home from Reuben's first holiday abroad and I think we did ok.
Our flight to Tenerife was at 7.15am, which meant we had to leave our house at 4.30am. This wasn't as bad as I thought it would be as we just woke Reuben up, got him dressed and went out of the door.
Obviously we had to prepare Reuben beforehand about where we were going, what we were doing and what would be happening while we were away. I think he was fine with it all as he seemed quite happy.
Reuben loved going in the taxi (simply because it was just a different make of car ha) he spent the journey to the airport looking out of the window and telling Nanny and Grandad that we are all going on the aeroplane.
Once at the airport my heart sunk as the queue to check in was massive and the airport was really busy with crowds of people (2 things Reube hates)
Luckily the queue moved quite fast and Reuben only got fed up as we approached the front, by which time he kept sitting on the floor and refusing to get up, which was holding the people behind us up!
Going through security was a bit of a nightmare as Reuben had had enough by then and it was really hard to get him moving. He would sit on the floor and refuse to move, this deemed quite a challenge when carrying my own bags, Pip the teddy and Reuben's hand luggage!!!
I was a bit worried how Reuben would react to going through the beeper machine (don't know the real name ha) but he seemed to cope really well. That might be down to us telling Reuben that Pip the teddy was also going through his own machine to have a special photo taken.
Once through security we had just enough time to grab some breakfast. Reuben was so happy to get his morning cup of tea, it calomed him instantly. I have never seen him enjoy a cup of tea quite like it. Thinking back now, maybe I should have made him a cuppa in his travel cup to have in the taxi. It might have set him up for the day.
We were so lucky with the seats we had on the plane as they were right at the front and had extra leg room.
Reuben coped really well with getting on the plane and letting us put his seat belt on. I gave him a sticker book that was all about aeroplanes and airports so we sat and did this whilst waiting to taxi on to the runway.
Surprisingly, Reuben didn't care at all about taking off. There I was trying to get him to look out of the window as we sped down the run way but he looked straight ahead with is thumb in.
Even as we were up in the air and the clouds were visible from the windows, Reuben still did not seem to care or notice. It was as if he had gone into his own little world to protect himself from this strange new situation!
Once the seat belt sign went off, we were able to get Reuben's bag down from the locker and get his things out. He played for a while on his Leap pad, then got his cars out.
As we were half way through the flight, Reuben got a bit fed up. Thankfully we had a back up plan!
My husband had put quite a few episodes of Peppa Pig and Ben and Holly on his ipad. Reuben loves these programmes so we hooked his hearing aids up to the ipad using the special adaptors. These are better as the sound goes straight through to his hearing aids whereas normal headphones don't.
Reuben sat watching this for a good while and it seemed to calm him down a lot ( a very good idea by us ha)
Once the seat belt sign came back on and we had to tidy Reuben's things away, he got agitated again. This was simply because he didn't want his seat belt back on, he liked the freedom of standing by his chair and playing.
So, my husband and I spent the whole time until we landed holding his seat belt as Reuben had figured out how to undo it. This, he did not like at all and so we had a quite a temper as we came into land. The sound of Reuben screaming and making a whole lot of noise could not be helpful for any nervous travellers on our plane...Sorry!
Our next challenge was the dreaded wait for our luggage. Reuben had had enough by now and really didn't want to do anymore waiting.
Luckily we got our pushchair quite quickly and he was able to sit in that and cuddle stinky blanket.
Once on the coach, we had to do the dreaded waiting thing again which meant Reuben was now doing anything he could to be disruptive and as awkward as possible. He was standing on the seats, shouting, pulling his Nanny and sisters hair and generally being a pain in the bum.
As soon as the coach started moving he was fine and sat and watching everything from his window.
Now for the holiday....
Friday, 14 June 2013
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.
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.
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.
Wednesday, 29 May 2013
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????
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????
Wednesday, 22 May 2013
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.
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.
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