Tag Archives: hospital

The OT


Yesterday was D’s long-awaited trip to the occupational therapist. I say long-awaited as it was last June the whole process began to get him looked at after the school thought it would be a good idea because of his wonky fingers – which have since been diagnosed as hyper mobility.

His appointment was after lunch, so he had the morning at school, and wasn’t too happy at that prospect! I think the thought of seeing yet another new person to prod him about was worrying him ever so slightly. He was fine though when I picked him up, and despite the rain, we went to have a picnic with Hubby – he works in a building right next door to the hospital.

As the time of the appointment approached, he began to ask what they would be doing to him – I of course couldn’t give him an exact answer, just that it was to try to get him some help for his hands because of his funny joints. He was happy with that explanation.

We were a little early and he was happy to play a few races on the Mario Kart wii game in the waiting room, but held tight to my hand once his name was called.

The occupational therapist was only about 12 – I think that is a real sign I am getting old when everyone seems to be so much younger than me!, but she was very pleasant, and spoke to D, only including me in the questions when he wasn’t being responsive. When asked if he knew why he was there he said “because I can do this”, and proceeded to do his party piece of bending his fingers the wrong way – makes my stomach churn every time he does it!

There was a second OT in the room, observing from behind, and making notes. It was a huge room and we were sat in the corner, and I don’t know about D but it did feel intimidating being observed from both sides!

Firstly they had him doing some writing, as this is our major concern. His school work suffers because he finds holding pencils so painful. We have tried different styles of grips, as has his teacher, so he was showing the OT which ones he had used in her huge array of different styles. She had him choose his favourite and set him about writing his name a few times. As usual he was gripping his pencil so hard his fingers were turning white, and his pressure was causing the paper to go through. Seeing him do this, it is amazing the things you just accept and not realise they are a little out of the ordinary! She then gave him a sloping board to use, it meant that not just the angle of his hand changed, but that of his whole body as he had to improve his posture to use it! Straight away, the writing he did was much less pushed through the paper. They decided he should be given a board to take to school to use.

He then had to demonstrate his use of scissors, which is something he usually looks so dangerous doing as he fumbles with, but instead today, he was cutting very patiently, and looked as if he had no problem there.    He so wants to please people that he made sure he did what he was asked to do, even though it was at half the speed and potentially painful.

Using cutlery has always been an issue for him, and he much prefers to use his hands.  We have not been sure if this is because of his fingers, or a sensory thing to do with his aspergers. They tried him with various styles of cutlery, having him cut up play-doh sausages, and he said it was easier with proper ones. I do think it was more a case of the chunky handles looked like ones he had when he was just starting to learn to use them so he didn’t want “baby things”. He was told to remember to make sure his hands were in the correct position – which he was shown, and then cutting would be much easier for him.

He then was shown an easier way to tie his shoe laces.   When we have tried  before,  he has ended up saying his hands are sore from trying – never convinced if its a reason or an excuse.    This way was much easier, and we will definitely be practicing with this – if he can master laces it will be so much easier to get shoes that will fit his ridiculously wide feet.

Then came buttons.     Large ones he was fine with on a garment on the table in front of him, but as soon as it got to smaller ones he was fumbling.     It was suggested a way to make it easier was to replace the tread with elastic so the button moves more to get it through the hole, so I might have to get Old person on a sewing task!    Another idea was that he always did his buttons in front of a mirror so he could actually see what he was doing – painfully simple but something we had not thought to try!

He was then taken to the matted area to test his core strength, because of his clumsiness.    His balance was dire – which I knew it would be.    I did have to remind her it was just 8 weeks since his knee op as he looked in pain as he was asked to go onto all fours!        It was suggested that he had additional sessions which are about core strengthening.     I think it will be really good for him, so readily agreed to that.     She had him trying to walk along a line on the floor, going toe to heel.   It was one of the funniest things I’ve seen in a long time as his feet were nowhere near the line however hard he tried!

They had seen enough, and decided to summarize what had been seen.

They said he needs to slow down when doing tasks – I didn’t laugh out loud at this but D doesn’t do slow, once his brain gets going, his body just has to keep up or we go into meltdown.     Their reasoning is that if he thinks more about doing things correctly it will help his body know what it should be doing.   Great theory which we will try to implement.

Then came the bomb shell.    They think its important he learns to type as the more writing he does at school the more pain he will be in!      I asked about exercises that might help strengthening his hands, and basically they said that just keep using them!     We were given a pile of handouts about tasks and games that were good for honing fine motor skills, we will defiantly be having a go at some of them.

So how do I feel now.     As usual, you come out of these thing feeling as if you are a failure as a parent.    It is nobodies fault, just the nature of sessions where strangers are telling you what you should be doing with your child, or what you have been doing wrong!      I do think its a positive getting the board to help with his writing – I did have a chuckle when thinking when I was at school, all desks were angled anyway!     I am upset that they feel becoming keyboard confident is a priority because they feel he wont improve his hand strength.      I think it is something we continue to work on in the home, and I will just keep making the play-doh for him to spend hours squeezing to try to strengthen those muscles.    The core building sessions sound as if they will be good for him, and if he can strengthen his core it has to be good for his legs.

For now though, it’s another box ticked and we move on.

They look like real screws!


Yesterday was D’s 6 week follow-up at the hospital.      It doesn’t seem like it is only 6 weeks since his op, but it’s actually only 5 1/2!       He has come a long way in such a short period of time.   I am really proud of how well he has coped with it all.

As usual, there was nowhere to park at the hospital that was close, and so we had a long walk to get to there.    D wasn’t happy that I made him hurry, as despite giving ourselves loads of time, we were still hit and miss as to getting there on time.    We needn’t have worried, as it was the usual long wait.    D though was happy to thrash me at table football while we waited.   He then played on the Mario Kart wii game, where a boy probably twice his age was sitting and commenting to his dad about how good D was on it!      I did some minor celebrity spotting while waiting as the STV newsreader was there with what I assume is her son!

Eventually we got called in and the consultants assistant – who had seen D several times a day while he was in hospital, watched him walk down the corridor to the clinic room.     She then took the consultation.    She was very impressed how well he was walking after a short pace of time.       Before we went in, I had said to D he had to answer any questions put to him honestly – usually he will not tell a doctor if he is in pain, and then doesn’t get treated correctly, but today he did good.    When she asked him about pain or discomfort, he spoke clearly and so she was able to get a good picture of what was going on.      She actually apologised to him that he had been having problems with one of the wounds but she was satisfied that it was now healing.       Then came the exciting part for D when she showed him the x-rays of the pins in his legs that had been taken in theatre.     He was out of his seat and over to the monitor!        The classic quote from the day has to be “they look just like real screws!”       Without laughing, she explained to him that they were exactly the same as the ones in Daddys tool box!      I was really impressed how she directed all the conversation to D.   The appointment was about him, and she made him the centre of what was going on.    I have said it before that nothing annoys me more when you go to the doctors with the children and they are talked through rather than to.          Then she explained what happens now.        The long-term is the plates can only stay in the legs for 2 years.      This therefore means they have to keep an eye on what they are doing as he grows.   Every three months during the next couple of years he will have to go for x-rays to check his legs are beginning to turn the way they should be.       That seems simple enough, other than it is the standing up x-ray machine he will have to go on, and last time, it took ages to get him still enough for full leg images – standing still is just something D finds very difficult, if not impossible.         That all sounds fair enough.       Then she dropped the bomb shell that had D looking petrified.         That should the pins have moved then they will have to take him in asap to have them removed!       D was well aware that in 2 years there would be another op to have them removed, we believed it was important he understood that, but to tell him it could be at anytime got him a little worked up.      She tried to comfort him by telling him that everyone she has ever done the removal op on says it hurts a lot less than the putting it.       He just eyed her with suspicion at this!

When we got out, he let rip about how he didn’t want another op until his 2 years were up.       I tried to pacify him by telling him that as long as he was careful and didn’t go out of his way to damage his knees, the plates and screws would stay where they were meant to and do their job!       He wasn’t going for it, and so distraction techniques were employed and I asked if he wanted lunch – it was too late for getting back to school by then anyway!    It worked and he calmed down!!

So it’s all go for him swimming, running and basically getting on with life.      He just needs to do some growing so the plates start to do their stuff and he reaps the benefits of having straight legs!

At the moment he walks with a terrible limp, and when asked about it he says that he walks like that because it stops it hurting.     I am not sure if he is really in pain, or if it is a psychological thing that walking oddly actually makes him think about is knees!    Whatever it is, the limp is there, and it will be until he sees fit to stop doing it.      He has started running around, and I shouldn’t take the mickey, but he does look very funny as he kind of rolls as he does it – a little like a cartoon drunk sailor!      It is good that he feels confident to start doing going for it.       The other evening he started spinning.      It is his thing, M flaps, and D spins.    He hasn’t been able to do it since the op, and I do wonder if that has been part of his frustration.      The spinning is a totally personal sensory thing, and he keeps going round in circles until he has made himself so dizzy that he has to stop, be it by choice or by falling over!     When he had finished spinning the other day, he looked so happy.   It was as if he had been wanting to do it for so long but just hadn’t been able, but now he had, it just felt good!      Sometimes his spinning is scary to watch, he is conscious he is doing it, but once he starts, almost another force takes over, and he has to keep going until he is spent.       He also tried to go on the trampoline last weekend, but that wasn’t such a happy time, as screams and tears followed a minor knock on his knees.    I think this is a lesson that while he seems back to normal he still has to be careful.

He hasn’t had gym at school since the op, but will return to that after the holidays.     He will also get back to his beloved dancing classes -https://jas2jar.wordpress.com/2013/12/08/special-needs-dancing-fun/ .    Both boys have really missed them, and are very excited about the prospect of returning.     It is great that they have an environment that they feel so comfortable in.

I am proud of everything he has achieved in the last few months, and things can only get better as his legs get straighter and stronger.

Preparing for the OT.


D has been waiting for an appointment with the occupational therapy department at the hospital since last June.     At the end of year review at school, his dexterity problems were raised and it was advised we visited our GP to ask for a referral to OT.     The GP thought he would be better seen by the school doctor service, and that came around in September of last year – https://jas2jar.wordpress.com/2013/10/01/d-and-the-doc/.       The appoint was what ultimately led to his recent operation on his knees.

D was in the system to see OT, but we were told he could wait up to 18 months for an appointment as the service was spread very thinly.      We received a letter saying we could go on the short notice list if we wanted, we opted for this.   It means if for some reason there is a cancellation, then the appointment can be offered to someone else.

Anyway last week I got a phone call offering me two possible dates for an appointment, one was when we are away at Easter, so he is going to have to miss another half day from school to go to this appointment – it is only a matter of time before I get a letter about his poor attendance this term, but if he is ill or in hospital, there isn’t much to be done about it.

Yesterday I then received a pack to be completed as it is his first appointment with them.     The kit consists of two checklists to be filled in, one by us, and one by the school.   It will give them a better idea, of where they are starting at with his needs.

Last night Hubby and I sat down to fill in the form.    I was instantly heart-broken.    I really hate these things.     I have always had the attitude of putting a positive spin on as much as possible for the kids.    I think it is so important to boost a childs self-esteem, but not to a level that they think they are invincible!        To focus on what your child can’t do is just an unpleasant task.      For us, the boys are just the boys, and we do for them what they need to have done.    Isnt that just part of being a parent?      When though you have to tear apart every activity they do and look at it in such a way that compares them with their peers to see if they are attaining the same level of competence it is difficult – after all, should we really be comparing kids achievements?         If it was about mental ability, D would be all happy thoughts as he is ridiculously intelligent – a post for another day I feel, about how upset I get that he would rather hide in the crowd than show his true potential but luckily his present teacher has engaged him to pull him out of himself a bit.        However, it is his physical problems that we are talking about here, and after all, that is why we wanted to see OT in the first place.

In my head, my kids can do whatever they put their mind to – all be it with guts and determination a lot of the time.      I think maybe one reason I don’t look at D’s problems so much is I was always the plodder.    I got there in the end as long as I went at my speed and did it my way!     He is a lot like me in this respect.   He is not the fastest, but didn’t the tortoise teacher us an important life lesson?

So the forms looked at everything from dressing – the fact we don’t buy him things with buttons on because his finger have problems is just normal for him, but isn’t normal for your average 6 yo, to feeding himself – he often asks for help with cutting or resorts to picking food up because he doesn’t have the strength in his hands to cut his food for a full meal.      Even the things like his clumsiness have been detailed – apparently walking into stationary items is not what “normal” kids do, and yet D runs into a tree in the school playground at least once a week, and falls over our coffee table every day!

It was a heart breaking hour filling this in.    Then it asked what do you want your child to be able to do?      There is only oner truthful answer to that for me, and that is whatever he wants to do!   That however isn’t really a sensible answer to write down so we went for improve his writing as it is holding back everything else at school, but if holding a pencil hurts then its going to be hard for him.    We actually purchased some wide bore pencils and pencil grips for him to try to help him.       We asked D what he wants to achieve and he said he wanted to be just like the other boys in his class.      Well, that’s never going to happen, for in my mind he is in a class of his own, but I know what he meant.   He wants to be able to do things they do without feeling pain or discomfort.

I am preparing myself for another lecture about his weight.   I know it’s a factor, but it’s not the only thing.    The physio he worked with recently commented on more than one occasion about his flexibility being on the high-end of the scale, and you only have to feel his fingers to think you are holding hands with an elderly person riddle with arthritis, they are so nobly.

I will put the form in to his teacher, but I imagine their findings will show something different to ours.   Not that there will be unfair judgement, but because D works so hard to be invisible in school.    He doesn’t want to be thought of as different even though the truth is far from that.     I can understand he doesn’t want to make a fuss but if he spoke out more when he was in pain or having physical hardship then he would get help more often.        I know though his teacher will be as honest as possible in the way she fills it in, as in the long run, anything that helps D will make her life a little easier.

It’s now a case of returning to focus on the positive until the actual appointment, as the negative thinking last night turned me into a nightmare of a person.     I need to think happy thoughts and while my kids row constantly and behave like total ratbags the majority of the time, I love them to bits and want above all else them to be happy and have happy memories of their childhood.