Reuben has never been great at understanding his feelings.
When he was alot younger he would find it very difficult to express his emotions so would in turn, lash out at people or generally have a meltdown.
Then, after a while he understood being sad (might be that when he was naughty he ended up in the sad mat, alot)
We had various pictures of feelings for Reuben so that he could point and tell us what he was feeling or we would ask him if he was feeling cross, sad, happy etc.
It wasn't long before Reuben could understand the feeling of cross and he would tell us if he was cross and then we could do our best to calm him down or just to leave him alone til he calmed down himself.
Although Reuben has had these issues with his feelings, we have always made a point of telling Reuben that we love him, everyday more than once. Whether that be after saying goodnight, goodbye or just when having a cuddle with him. But, Reuben has never said it back to us.
When asked if he loves Mommy or Daddy he will reply with "Yes" and that is all.
That was until last night...
Reuben had just finished watching his programmes and I was taking him to bed. I tucked him in and took his glasses off then said (as I always do) "Love you Reuben" and to my complete amazement he said "Love you" back!!!!!!!!
My heart must have melted there and then in an instant. I squeezed him so hard and kissed his cheek then went running into his Dad to tell him and that he too should go and tell Reuben that he loves him to see if he says it again.
And he did!!!!!
It may seem such a little thing to anyone else but this to us is such a massive gigantic step and I am so happy to have heard him say it back.
Taking Reuben to school this morning, giving him his bags and a kiss goodbye then saying "Love you". I was expecting him to say it again, but no. I just got the usual "yes". But, I don't care as he said it once and that means so much to me.
Wednesday 6 November 2013
Stop Banging...
As well as his love for cars, Reuben likes to "fix" things.
One Christmas a couple of years ago, we thought it would be a great idea to buy Reuben a toy work bench with toy tools.....Oh, how we are regretting that decision now!
From that day forward Reuben feels the need to fix everything in sight, whether that be a door, radiator, chair ,wall and basically anything that is in our house.
He will grab his tool kit and start fixing. This "fixing" involves lots of banging, pulling and turning of things. But it got to a point where Reuben was doing more damage than good. Things were getting broken, scratched or damaged. So, I made the decision to put away all the tools and the work bench and move them all into the garage to play with in the garden when he goes out there.
For the next few days, this was great as Reuben would play with his cars or some other toy in his room. But that soon changed. Reuben discovered anything could be used a a tool or just to bang!
By anything, I mean bricks,magic wands or bits off the farm. Basically anything he could bang something with.
We have now reached a point where as soon as Reuben gets back from school, he gets his bricks out and starts "fixing". The constant banging is horrendous. Our house resembles something of a construction site.
Reuben will get up fairly early in the morning on a weekend, so I will bring him downstairs for his cup of tea and breakfast and put the television on for him. As soon as he has eaten his last bite of breakfast, off he goes to start building, fixing and generally banging. The problem with this is not only is it largely annoying, he also does it all on the landing in front of every ones bedroom doors.
So, me bringing him downstairs to keep him quiet while everyone else in the house can have a lie in, he is constructing away and waking everyone up!
Last weekend, Reuben was making that much noise with the sheer force that he was banging his bricks that I simply could not take any more and took the instrument that he was using for the banging off him. As you can probably imagine, he went berserk. He ended up having a complete meltdown for around an hour.
This behaviour has got me to thinking, Is this more than just playing at building or is it Reuben getting some sort of sensory stimulation from it?
I started to observe him more and noticed that Reuben bangs everything, all the time. He can be standing in the kitchen talking to me and he will have a car in one hand and a brick or something in the other and be banging them together. When he is sitting watching television, he will be sitting on the sofa with a couple of objects banging them together.
It is really hard not to get cross and stop him from banging things together but it is just so annoying.
The question is, what do we do about it? Reuben has been under an Occupational Therapist and she has said that his does not have SPD (sensory processing disorder) and has now discharged him. Besides which, technically we are not funded to have an OT as Reuben attends a mainstream school, therefore does not qualify for funding for one where sensory issues are concerned.
We have a multi agency meeting at Reuben's school coming up so I will be mentioning this constant banging there. But going on recent concerns with Reuben, no one will have a clue why he is doing it and no one will want the responsibility of the problem.
One Christmas a couple of years ago, we thought it would be a great idea to buy Reuben a toy work bench with toy tools.....Oh, how we are regretting that decision now!
From that day forward Reuben feels the need to fix everything in sight, whether that be a door, radiator, chair ,wall and basically anything that is in our house.
He will grab his tool kit and start fixing. This "fixing" involves lots of banging, pulling and turning of things. But it got to a point where Reuben was doing more damage than good. Things were getting broken, scratched or damaged. So, I made the decision to put away all the tools and the work bench and move them all into the garage to play with in the garden when he goes out there.
For the next few days, this was great as Reuben would play with his cars or some other toy in his room. But that soon changed. Reuben discovered anything could be used a a tool or just to bang!
By anything, I mean bricks,magic wands or bits off the farm. Basically anything he could bang something with.
We have now reached a point where as soon as Reuben gets back from school, he gets his bricks out and starts "fixing". The constant banging is horrendous. Our house resembles something of a construction site.
Reuben will get up fairly early in the morning on a weekend, so I will bring him downstairs for his cup of tea and breakfast and put the television on for him. As soon as he has eaten his last bite of breakfast, off he goes to start building, fixing and generally banging. The problem with this is not only is it largely annoying, he also does it all on the landing in front of every ones bedroom doors.
So, me bringing him downstairs to keep him quiet while everyone else in the house can have a lie in, he is constructing away and waking everyone up!
Last weekend, Reuben was making that much noise with the sheer force that he was banging his bricks that I simply could not take any more and took the instrument that he was using for the banging off him. As you can probably imagine, he went berserk. He ended up having a complete meltdown for around an hour.
This behaviour has got me to thinking, Is this more than just playing at building or is it Reuben getting some sort of sensory stimulation from it?
I started to observe him more and noticed that Reuben bangs everything, all the time. He can be standing in the kitchen talking to me and he will have a car in one hand and a brick or something in the other and be banging them together. When he is sitting watching television, he will be sitting on the sofa with a couple of objects banging them together.
It is really hard not to get cross and stop him from banging things together but it is just so annoying.
The question is, what do we do about it? Reuben has been under an Occupational Therapist and she has said that his does not have SPD (sensory processing disorder) and has now discharged him. Besides which, technically we are not funded to have an OT as Reuben attends a mainstream school, therefore does not qualify for funding for one where sensory issues are concerned.
We have a multi agency meeting at Reuben's school coming up so I will be mentioning this constant banging there. But going on recent concerns with Reuben, no one will have a clue why he is doing it and no one will want the responsibility of the problem.
Monday 4 November 2013
SPDC
So, as I mentioned in a previous post, we as a family get to go to various activities through different groups that are there to support children and families in our situation.
One group that we are part of are called SPDC, this stands for Sandwell Parents for Disabled Children. They are fantastic!!!
As we are on their mailing list, we get sent information about the various activities that they are running. In the summer holidays, we went to a soft play place, horse riding, adventure centre and they held a party at the end of the holidays.
We had a fabulous time at all the activities, and what makes these occasions even better is that there are staff on duty that come along to the activities to give a helping hand if needed. Siblings are also invited to the activities which I think is a great idea.
For example, the soft play centre trip. SPDC had booked the whole centre out which meant that all the children with additional needs could feel comfortable climbing, playing, sliding and generally having fun without getting knocked over or picked on or laughed at.
Reuben had a great time considering he doesn't usually like those places as he finds them noisy and there are too many people. Hermione, Reuben's sister also came along which meant that she got to meet other siblings like her who have a brother or sister with additional needs.
The horse riding trip was great too. Reuben got to assigned to a horse which was called, Arnie.
When we got there the children were all given riding boots and a helmet. They were then taken to their horses stable to brush the horse and help put the saddle on.
Reuben was quite good at brushing his horse, in fact he was actually quite gentle. Although I had to keep a close eye as Reuben seemed to like the brushes texture on his tongue and kept licking it. He must have also thought the horse had an interesting smell as he kept smelling it (and even had a cheeky lick of the horse)
Once he had groomed his horse he then got the chance to ride it. I think Reuben enjoyed this, he didn't seem too bothered to be fair and was more interested in chewing the strap on his helmet!
All day while at the horse riding day, the staff from SPDC were there to offer any help, hand out drinks and take lots of photos. Again, Hermione and Bethany came along and also got a horse to look after and ride on. The staff were there to help them too which I thought was great.
The SPDC recently celebrated their 25th anniversary (amazing as I only heard about them in July 2013) and they held a party for all the children, parents and there siblings. I booked to go to this but admit, I was a bit dubious as Reuben doesn't really like parties and these sort of events turn out to be a disappointment with only a few things for the children to do.
I am pleased to say that i needn't have been worried. It was a great fun filled afternoon.
Reuben really wasn't keen on going in once we got there and refused to go in (probably because he has never been to that building before)
Once in, and the promise of cake, Reuben seemed to relax and enjoy himself. There was thankfully a cake stand and Reuben ended up visiting it around 3 times!!!
There were stalls to win things and stalls to buy things. There was a pamper area where not only the parents could get a treatment but also the children. There were wheel chair sports which Hermione loved and there were out door activities too such as football, face painting and a barbecue.
Yet again the SPDC staff were there on hand to look after the children if needed, take part in the activities or just stand and chat.
I am so thankful that I have found this group and am now looking forward to going to many more of the activities they organise.
Unfortunately we missed a brilliant one recently where they hired out the entire leisure centre swimming pool one evening, with chips and drink afterwards. But I am sure there will be another one like it soon.
So now school holidays and weekends don't seem so daunting, knowing that they are going to be arranging things that we can all go on and feel comfortable doing.
And sleep...
As I have mentioned, Reuben not sleeping has been a major problem since Easter.
Nothing big changed at that time, he just went from being a really good sleeper with a lovely bedtime routine to being up till after midnight and getting up in the night.
Various professionals have given their suggestions as to why Reuben has suddenly started staying awake. For example; the lighter nights, spacial awareness, needing later bedtime, too many toys in his room, too much stimulation and watching tele before he goes to bed.
As the weeks and months went by, we started to change/swap or remove these so called problems to help him sleep.
We started by not letting him have tele time before bed and letting him stay up later. This in turn caused him upset as watching tele in our bed before he goes to sleep in his bed was part of his bedtime routine. Keeping Reuben up later also caused even more problems as the later we kept him up, the later he went to sleep!!
Next, we brought a blackout blind and made sure that his room was nice a dark and cosy before he went to sleep. This caused Reuben to stay awake and keep his big light on. We then went out and brought him a night light, but still he kept the main bedroom light on.
After much deliberation, we decided to go down a more drastic measure and remove all the toys from his room. Obviously we didn't get rid of his toys . We just put some of them in storage in the garage and some downstairs in the living room.
Reuben's room looked terrible and more like a prison cell, but for the first 2 nights it worked so we thought we had cracked it!
But, no. Reuben then started playing with his furniture, trying to move it around or strip his bed of all the covers and sheets. He would then spend half an hour jumping up and down on his bed, shouting.
After carrying out these measures to get Reuben to go sleep and it not working the so called professionals were completely baffled. They had no other suggestions left and therefore couldn't help us. We were basically on our own to cope with Reuben and ourselves having no sleep!
The final straw came when Reuben woke up at 4am one morning and made as much noise as he possibly could, It literally sounded like he was having a mad party in his bedroom!
He woke the whole family up, he was just completely wide awake and would not settle or calm down.
At a routine appointment with Reuben's paediatrician, I explained again the trouble Reuben was having and told her out right that I wanted Reuben to be given Melatonin. I had done alot of research on Melatonin and heard about the many pros and cons.
Melatonin is a natural hormone that everybody produces. As it gets darker our bodies produce this hormone and it makes us feel tired which then in turn helps us to fall asleep.
I have heard that people with visual problems can produce less of this and as Reuben has Ptosis and wears a very strong prescription in his glasses, it made sense to try him on it.
Reuben's paediatrician didn't hesitate and prescribed the Melatonin straight away.
The first night, I put it on a biscuit for him as it comes in tablet form and needs to be put on or in something. I gave it to Reuben around 7.15pm and by 8pm he was fast asleep in his own bed....Result!!!
The next few nights followed suit and Reuben was asleep for 8pm. On the fourth night, he managed to get 12 hours sleep.
It has become a god send and I can really see the difference in Reuben and his behaviour. He seems more focused, happy and can concentrate for longer periods.
The first week of Reuben being on Melatonin came with a slight down side.
I had a massive feeling of guilt. I felt like I was some how deceiving him or tricking him in some way. I know that's not the case and that Melatonin is a natural hormone and not a drug but I couldn't get past this sense of guilt. It seemed worse because I was so used to not going to sleep until Reuben had dropped off that my evenings were filled with running up and down the stairs checking to see he was safe and OK or trying to calm him down so that his sisters could get some sleep. When all of a sudden, I had whole evenings to myself!
I found myself looking at the clock every 5 minutes and constantly checking on Reuben, but as the time went on the guilt started to disappear and I realised that this is what is good for him and its in his best interests that he gets a good nights sleep.
When I mentioned my feelings to Lisa from CAMHs, she asked me this..."if Reuben was able to choose whether to take the Melatonin and get a good nights sleep or whether to stay up all night along with getting up in the night. Which one do you think he would choose?"
When you look at it like that, I know we have made the right decision.
Nothing big changed at that time, he just went from being a really good sleeper with a lovely bedtime routine to being up till after midnight and getting up in the night.
Various professionals have given their suggestions as to why Reuben has suddenly started staying awake. For example; the lighter nights, spacial awareness, needing later bedtime, too many toys in his room, too much stimulation and watching tele before he goes to bed.
As the weeks and months went by, we started to change/swap or remove these so called problems to help him sleep.
We started by not letting him have tele time before bed and letting him stay up later. This in turn caused him upset as watching tele in our bed before he goes to sleep in his bed was part of his bedtime routine. Keeping Reuben up later also caused even more problems as the later we kept him up, the later he went to sleep!!
Next, we brought a blackout blind and made sure that his room was nice a dark and cosy before he went to sleep. This caused Reuben to stay awake and keep his big light on. We then went out and brought him a night light, but still he kept the main bedroom light on.
After much deliberation, we decided to go down a more drastic measure and remove all the toys from his room. Obviously we didn't get rid of his toys . We just put some of them in storage in the garage and some downstairs in the living room.
Reuben's room looked terrible and more like a prison cell, but for the first 2 nights it worked so we thought we had cracked it!
But, no. Reuben then started playing with his furniture, trying to move it around or strip his bed of all the covers and sheets. He would then spend half an hour jumping up and down on his bed, shouting.
After carrying out these measures to get Reuben to go sleep and it not working the so called professionals were completely baffled. They had no other suggestions left and therefore couldn't help us. We were basically on our own to cope with Reuben and ourselves having no sleep!
The final straw came when Reuben woke up at 4am one morning and made as much noise as he possibly could, It literally sounded like he was having a mad party in his bedroom!
He woke the whole family up, he was just completely wide awake and would not settle or calm down.
At a routine appointment with Reuben's paediatrician, I explained again the trouble Reuben was having and told her out right that I wanted Reuben to be given Melatonin. I had done alot of research on Melatonin and heard about the many pros and cons.
Melatonin is a natural hormone that everybody produces. As it gets darker our bodies produce this hormone and it makes us feel tired which then in turn helps us to fall asleep.
I have heard that people with visual problems can produce less of this and as Reuben has Ptosis and wears a very strong prescription in his glasses, it made sense to try him on it.
Reuben's paediatrician didn't hesitate and prescribed the Melatonin straight away.
The first night, I put it on a biscuit for him as it comes in tablet form and needs to be put on or in something. I gave it to Reuben around 7.15pm and by 8pm he was fast asleep in his own bed....Result!!!
The next few nights followed suit and Reuben was asleep for 8pm. On the fourth night, he managed to get 12 hours sleep.
It has become a god send and I can really see the difference in Reuben and his behaviour. He seems more focused, happy and can concentrate for longer periods.
The first week of Reuben being on Melatonin came with a slight down side.
I had a massive feeling of guilt. I felt like I was some how deceiving him or tricking him in some way. I know that's not the case and that Melatonin is a natural hormone and not a drug but I couldn't get past this sense of guilt. It seemed worse because I was so used to not going to sleep until Reuben had dropped off that my evenings were filled with running up and down the stairs checking to see he was safe and OK or trying to calm him down so that his sisters could get some sleep. When all of a sudden, I had whole evenings to myself!
I found myself looking at the clock every 5 minutes and constantly checking on Reuben, but as the time went on the guilt started to disappear and I realised that this is what is good for him and its in his best interests that he gets a good nights sleep.
When I mentioned my feelings to Lisa from CAMHs, she asked me this..."if Reuben was able to choose whether to take the Melatonin and get a good nights sleep or whether to stay up all night along with getting up in the night. Which one do you think he would choose?"
When you look at it like that, I know we have made the right decision.
Toilet trained...it's offical!
I have never really been able to say that Reuben was fully toilet trained. He would go to the toilet but I would have to remind him or just take him as he would get quite engaged in what he was doing and forget to go.
This would then lead to him running to the toilet at the last minute and having a little "dribble" or him completely wetting himself.
We have worked really hard with him to get him to use the toilet. We have had sticker charts in the toilet ( quite a task as we have 3 toilets in our house) and having a prize bag for rewards.
This worked really well until Reuben had a school holiday or was off school ill. He would then revert back and start having lots of accidents. Sometimes not even telling me he had wet himself.
Although having a wee on the toilet has been mostly successful, doing a poo has always been a problem. Especially when Reuben is not at home.
Whilst at school, if Reuben needed a poo, he would not use the school toilet and end up pooing his pants. This in turn caused embarrassment for him and if I am quite honest for me when I picked him up at the end of the day.
I was starting to feel like we would never get to being fully toilet trained and this left me feeling really quite upset. I felt it made Reuben stand out from all the other children his age even more than he does, made him different and that upset me. I felt like we were still in the baby/toddler stage with him when it came to toileting. And nothing seemed to completely work with him.
So to my utter shock and amazement, Reuben started going to the toilet by himself this summer!!!
Each day he would stop what he was doing, toddle off the the toilet, have a wee, pull his trousers up and go back to what ever activity he was doing. Even when we were out, he would tell me he needed a wee and get there in time with out any mishaps.
This carried on thought the 6 weeks holidays and it got to the point where Reuben would go to the toilet and I wouldn't know he had been until I saw him with his pants hanging out his trousers or the toilet seat up and no toilet flushed (can't ask for everything though can I?)
Reuben going to the toilet for a wee by himself also lead to him going to have a poo by himself, I just couldn't believe it. It was like a little switch had been turned on and he just "got it"
So, well done to Reuben for finally being toilet trained (and all done in the school holidays when he is the most disrupted)
This would then lead to him running to the toilet at the last minute and having a little "dribble" or him completely wetting himself.
We have worked really hard with him to get him to use the toilet. We have had sticker charts in the toilet ( quite a task as we have 3 toilets in our house) and having a prize bag for rewards.
This worked really well until Reuben had a school holiday or was off school ill. He would then revert back and start having lots of accidents. Sometimes not even telling me he had wet himself.
Although having a wee on the toilet has been mostly successful, doing a poo has always been a problem. Especially when Reuben is not at home.
Whilst at school, if Reuben needed a poo, he would not use the school toilet and end up pooing his pants. This in turn caused embarrassment for him and if I am quite honest for me when I picked him up at the end of the day.
I was starting to feel like we would never get to being fully toilet trained and this left me feeling really quite upset. I felt it made Reuben stand out from all the other children his age even more than he does, made him different and that upset me. I felt like we were still in the baby/toddler stage with him when it came to toileting. And nothing seemed to completely work with him.
So to my utter shock and amazement, Reuben started going to the toilet by himself this summer!!!
Each day he would stop what he was doing, toddle off the the toilet, have a wee, pull his trousers up and go back to what ever activity he was doing. Even when we were out, he would tell me he needed a wee and get there in time with out any mishaps.
This carried on thought the 6 weeks holidays and it got to the point where Reuben would go to the toilet and I wouldn't know he had been until I saw him with his pants hanging out his trousers or the toilet seat up and no toilet flushed (can't ask for everything though can I?)
Reuben going to the toilet for a wee by himself also lead to him going to have a poo by himself, I just couldn't believe it. It was like a little switch had been turned on and he just "got it"
So, well done to Reuben for finally being toilet trained (and all done in the school holidays when he is the most disrupted)
Update..
So,its been quite a while since I have posted anything on here as we have had the summer hols and that has more or less taken all my time up!
A quick and short update..
We had a really lovely summer holiday and for the first time ever it wasn't a nightmare having Reuben at home all day. He seemed to cope really well with not going to school.
Although that might have been because i had planned the summer holidays out like some kind of military mission!!!
We had lots of days out doing various activities, visited family and friends and Reuben also attended his Hazels club which he loved.
Lisa, our CAMH's worker gave me a handout at the beginning of the holidays with a list of activities that a Charity called SPDC were running.so, I booked a few and even booked Hermione, Reuben's big sister on too.
Reuben also had a week at the local special school, taking part in the summer play scheme, he loved it (once he remembered it from last year)
So all in all, a nice Summer break.
A quick and short update..
We had a really lovely summer holiday and for the first time ever it wasn't a nightmare having Reuben at home all day. He seemed to cope really well with not going to school.
Although that might have been because i had planned the summer holidays out like some kind of military mission!!!
We had lots of days out doing various activities, visited family and friends and Reuben also attended his Hazels club which he loved.
Lisa, our CAMH's worker gave me a handout at the beginning of the holidays with a list of activities that a Charity called SPDC were running.so, I booked a few and even booked Hermione, Reuben's big sister on too.
Reuben also had a week at the local special school, taking part in the summer play scheme, he loved it (once he remembered it from last year)
So all in all, a nice Summer break.
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