Tag Archives: mental health

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.

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Autism Awareness Day.

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Today, 2nd April, is World Autism Day.      It is a day to raise awareness of a condition that affects a huge section of society.

It seems every other day charities are asking us to dig into our pockets for one cause or another, and if like us, in the times we live, money is not freely available to donate to everyone, but this is something dear to our hearts and therefore we support the National Autistic Society – http://www.autism.org.uk/      They are an amazing life line to people who are living with autism, be it themselves, their families, or people that people with autism come into their lives.     When M was first diagnosed, we were left in mid-air.     After months of support through the process of diagnosis, we were basically handed a piece of paper and told have the best lives you can.     There was no help to understand what we were told, nobody to hold your hand as you get your head around the idea your child is different, and this is where the NAS became a life line.    The information they offer is amazing and they can point you in the direction of help that might be available.    Their website is a mind of information that can help with just a basic piece of information to details of the latest research.      Without them, I don’t know that we would have coped as well as we did in those first few months while we were trying to work out what to do.       Many areas have local branches where you can meet up with other parents for information share, or just some time with others who understand.   Unfortunately the local club we went to closed as their just weren’t enough volunteers to help out, and the nearest one is 40 miles so not a resource for us, but for those who have access to it then it can be a great help, as there is nothing more helpful than talking to someone who has been in a similar position to you – I think that is far more helpful than all the qualified experts put together!

What does today mean to us?

Well like all the other families across the world that live with a person with autism, for us every day is autism awareness day, because we are living it.     Today though means the condition is put more into the public forum.     Like many people, before M was diagnosed I knew very little about autism.     I just hadn’t come into contact with it, so just had the attitude it doesn’t affect my life so why bother?    I think this is a mind set many of us have, and I am certainly not judging, because we have so much going on in our lives that we can’t possibly worry about everything.    However when it does become part of your life, then you just cant understand why everyone doesn’t get the importance of understanding the way you do!

We have always been open with the boys about them being different.    They need to grow up knowing why some people treat them as if they have a deadly diesese!  We bought M a book when he was at the stage to talk to him about it.     The book is called Morty the Meerkat has Autism – http://www.amazon.co.uk/Morty-Meerkat-Autism-Avis-2011/dp/B00E320O8O/ref=sr_1_2?ie=UTF8&qid=1396433906&sr=8-2&keywords=morty+the+meerkat+has+autism    It is a fabulous book that just tells the story of a meerkat who is a little different, and how his peers learned to accept the things he did as just being part of who he is.      M has taken this book into school on more than one occasion and teachers have shared it with the class.     The first time his teacher came out afterwards and said after reading the book, he stood up and said he had a special brain.    I cried, and the teacher said she did when he said it!    It was amazing how he was able to do that.    D has also read the book many times, and asked questions about special brains.   When D was diagnosed, I asked him if he had understood what the doctor had said, and he said not really, so I told him, that he had a special brain as well, and he very casually said, “so I have autism too!”    We then explained to him about aspergers being a special kind of autism.    He was so accepting!

We have said to the school to be honest with children who comment on M’s oddities – D rarely shows signs at school, but it is hard for them to know what to say, and I do understand that, but it doesn’t help with helping others to understand when the situation is hurried away and not talked about.    If the school just said M is flapping because its his way of shutting down to process information then those around him wouldn’t be so upset by it.

Today though, people affected by the condition are making a public voice to say we don’t want much, just some understanding and people to stop before they judge.      Is that really too much to ask for?       It seems it is most of the time!

I would not change my boys for the world.   They are who they are.    I would however change the world around them.    D needs to know he is safe to let it all out when he needs to, and he certainly does when he is at home.     M though needs more understanding.   He needs people to stop thinking he is odd, and to just get to know him for who he is.     This can only come from education, and I don’t mean sitting down in a classroom, but learning who the person is and what their needs are – just like we should be doing with all people!

The gimmick for this years Autism Awareness Day is to wear a onsie.   I didnt think the boys would be up for this, but both wanted to wear them.    I explained that not many at school would be doing so, and they might get questions asked.   They still wanted to do it, but only if I wore mine, so I agreed.   M wanted me to go into his class before school to explain to his teacher, and she was already onto the idea, and was fine with him being in it.   I did say that if he was feeling stressed by it later in the day, to let him change into his gym joggers.     D’s teacher was shocked she didn’t know about it, and said she would write it in her diary so next year she would be on top of it.   She was however fine with him wearing his.

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We will send our text to donate our £3 for the cause.     “ONES14 £3” to 70070  if you at all interested.

What I ask of you is that next time you see a mother stressed dealing with a child in meltdown, don’t tut and stare, but ask if you can help, because maybe the parent needs someone to be understanding of what they are going through.   Not all people want to talk about whats going on, so be respectful, but if I am asked about my childrens behaviour, I will happily say about autism, and what it means to them – I prefer this approach rather than people believing my children are badly behaviour because I am a bad parent!

 

Preparing for the OT.

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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.