Draining

OK, this could be long or short lets see with how the typing goes.

On Friday we had a meeting with and Educational Psychologist at school now our son already diagnosed with Asperger’s Syndrome, ADHD and Motor Dyspraxia.  But we feel school aren’t supporting his needs and in areas it’s our word against school so I guess to silence us they agree to bring in and Ed Psy to agree with them.   Now having a few of these meetings when our son was younger to get on the pathway to diagnoses what hard, they had their own ideas and didn’t really listen to us and someone from school was always in the meetings.

Well Friday it was just us no school staff and what a meeting, we told him of the conditions Oliver has and how school said there might be one more but he explained that is was just a label and not much medical or normal research had gone into the condition and there for he wouldn’t be saying he had it and it is link to another condition of Dyspraxia, now as he explain Oliver has Dyspraxia within the Motor side of things and for the first time he explained more about it and was surprised Oliver had been diagnosed with Motor Dyspraxia rather than just Dyspraxia, as the motor side is the most visible but its the brain side behind it.

We were able to say all our concerns about Oliver and the response we had from teachers and the school.  He made some many notes and it he agrees with a lot of things we said,  from what we had said he worked out the best assessments for Oliver to do with him.  We explained we think Oliver struggles with English and Science and how we think he might need 121 support for those subjects and we believe he struggles more in other subjects for for now our focus is core subjects.

We explained we had applied for and ECHP assessment and had been turned down and we wanted to know what support Oliver needed and what support we could get for him.  The assessments that were done with Oliver will decide if he is behind, needs support or struggles.  In the report it will tell us if an ECHP would be a good idea.

So after pouring your heart out and feeling emotional drained from it, we did come out feeling that we were listened too and not brushed off. So now we have the waiting game of getting the report back and we can have another meeting with him to discuss the report or change anything we think shouldn’t be on there.

For me I look forward to getting the report back and having a meeting with school on how best to support Oliver going forward.

Maybe I am being too hopeful and all will come back that there is no concerns and the concerns I have for Oliver at home with homework is not the same as school. So lets hold our breath and wait and see.

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Chronic Pain

Dealing with Chronic Pain is tough especially been a 13 year old.

Since the summer and a change in schools, massive growth spurt which is still carry on and a horrid virus Rachel has been left with Chronic Pain.  With in the last few months she has had many GP appointments, resulting in X-rays, blood been taken etc and spells on the Children’s Assessment Ward even an appointment with Rheumatology.  All test have come back clear and left us if confusion and worry.  Rheumatology referred us to  Nuffield Hospital in Oxford and that has to be one of the best things.

After our first appointment it is believed Rachel has Chronic Pain, which doesn’t show up on any tests but thats not to say the pain isn’t real.  As the doctor explain it, it isn’t a hardware problem which would show up in tests but a software problem which won’t show up on tests.  Finally someone who understood and believed what Rachel was going through and we are parents didn’t feel fobbed off.

Rachel and ourselves attended a pain class today at Nuffield, to understand more about the condition,  I have to say the statistics are scary, Chronic Pain is more common in girls than boys and is so common, in a average secondary school about 10% of children have Chronic Pain and yet doctors struggle to diagnose it and children are pass to different doctors to find out what their symptoms are.  Doctors have a lack of information on the illness where they know all the signs of something as serious as Diabetes they don’t have that same knowledge of Chronic Pain and yet Chronic Pain is more common in children than Diabetes.   More research needs to be carried out in Chronic Pain to understand more the cause and why some children suffer and others don’t and what can be done to help that children, maybe even adults.  As for children it isn’t as simple as taking a pain relief tablet, as even the strongest of tablets won’t help.   While this is great for acute pain it doesn’t help on Chronic Pain, with all signal’s been mixed up.  Physio and OT along with seeing a doctors will help to resume a normal life and take baby steps on the way back to normality.  Rachel starts these appointments in March and we can only hope that slowly they begin to work for her.

The heartbreaking fact of today was the amount of girls in the class today, all with different types of pain and all with different stories to tell but all looking to ease the horrendous pain they are in all day everyday.   But with all the facts and advice today and the steps to help moved forward, we know its a long road to recovery and more importantly for all those girls there today, they were believed and not made to feel as some other doctors have that their pain doesn’t exist that it is all in the heads.

Remember to try and stay positive and that everything your going through is real.

 

Lets hope in the future more support and research is available for this to become ore known to doctors and more support is available in the form of classes today and special clinics.

 

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