Category Archives: school

The OT

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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.

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Return to normality.

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Today we return to normality.

While a lot of the country still have their feet up with the 4 day weekend, we are all back to the grind stone with Hubby returning to work and the kids back to school – there is much negative comment in the playground about the kids going back to-day here in the shire where the city kids have the day off.

These holidays seemed to have passed pretty easily, which is something I don’t often say after a two-week school break.     These shorter holiday usually really mess with M’s head because he just gets used to the change in routine before its time to get back to it.

During the first week, we kept ourselves busy with something planned for every day for the boys to do.    It is a very fine line to walk between keeping them busy enough to allow their minds to keep turning, but not so busy that they don’t realise they are meant to be chilling!

Week two was at Haven at Haggerston Castle.    It was a lovely break, and the weather was good, not warm, but dry and that’s what is important.    The boys love going to Haven.      It is great they have an environment they feel safe in.       I think we all enjoyed the break and came back feeling relaxed.

Now I am not saying we haven’t had our moments.    M has taken to keep telling D that he wishes he was in a grave.    I am not sure where this has come from, or where he might have heard something along these lines, but I find it totally vile, and punishments have been handed out accordingly.      D gets enough bullying out of the house, without feeling he gets more of the same when at home.   M has to learn quickly this type of comment is not acceptable.

D has been on an emotional rollercoaster in the past few days.     Something is worrying him but he doesn’t seem capable of vocalizing what it is.     He will sudden look really sad, and say he wants to cry.     He of course gets big hugs to make him feel safe and secure.   Sometimes this will calm him, but other times the tears have followed and he sobs uncontrollably.        He cant say what the matter is, just that he feels like crying.     Now, I am a great believer that a good cry can help to make things better, and so I would never tell him to stop crying, but it can be quite upsetting for me to see my baby breaking his heart with no rhyme or reason for it.       All we can do is let him have these moments in the hopes that they help him to sort out whatever is going on in his head so he can tell us when we he feels ready to do so.        This melancholy mood he is in, is also effecting his sleep.    Saturday night he was up three times, just needing cuddles  – I just need sleep at 3am, but he is always my priority.       It is so hard to know what to do or how to help him when he says he doesn’t know what is wrong.

Today the kids didn’t want to get organised for school.     M reluctantly got organised, but D was adamant he didn’t want to go as he doesn’t like school – that isn’t really the truth as he loves learning and totally adores his teacher, but his unhappiness is being thrown towards something tangible, and that is school.    I got him dressed and organised but walking up the road was a nightmare.   The walk takes a bout 5 minutes, but with the kids it’s usually 10, however this morning, M went on with the crowd we walk with, as D was in super go slow mood, and just held my hand as tightly as possible.       When I eventually got him into his line, he looked so sad that one Mum actually asked me what was wrong with him!     His head was down and he was focusing about the end of his nose.       I am sure once he was in and saw all of his friends he would have been fine, but it really tugs at your heart-strings to see your child looking so unhappy and knowing there is nothing you can do about it.

I am hoping they have both had a good day, and are ready to fight me over doing their homework!!!!

They look like real screws!

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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.