As you can tell from previous blogs school isn’t listening to us and brushing things under the carpet, our son isn’t too bad he just needs support in English and his handwriting, maybe even science with his grade dropping!
Anyhow back in April we wrote a letter to the head teachers with no reply what so ever and even with the SENCO a term on our son doesn’t have a surface/tablet to help with teachers reading his work.
Well yesterday some peed of parents wrote a letter to the govonors of the school and emailed it to them, well I woke up this morning to a reply that they are going to speak to school and get them to contact me.
Let’s see what the week brings 😀
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.
Well it’s the first week back after Christmas and things seem to be going well still. Oliver is having a good week the homework picked up a little in the middle of the week and he coped well, he completed all this homework in the one evening. His response was if I do it all tonight then 1. I can go to football training and 2. if I don’t get homework tomorrow then I will only have reading to do and can have a night off. That’s what happened 🙂
Oliver came out of school yesterday as normal no reaction from him on anything and then he goes into his book bag and pulls out a small certificate with a big smile on his face. He was awarded Star of the Week for working hard and always doing the right thing.
As you can image for children with ASD and ADHD doing the right thing isn’t always possible and concentration can stop them from working as hard as they might. So a massive proud mummy moment for not only Oliver getting the award but for the reasons too 🙂
I have created a group of Facebook call :
ASPERGER’S AND ADHD
To help support other families to share our stories and experinces please feel free to join and share and support.
Week one is down of the Easter Holidays, I think it has gone well. Oliver is much more relaxed this holiday and some days he has asked not to have his meds, which I did agree too and all has seemed to have gone well, he didn’t focus on anything and moved from activity to activity quite a lot, and to others this could have annoyed them but it didn’t bother me or Oliver I knew the reason why and was happy he was happy and there is times when he has to deal with his condition without having meds, he can’t have them 24 hours a day. We didn’t have many meltdown either which has been great.
Also by not giving him meds, it gives Oliver a chance to deal with his condition and learn to cope with the symptoms and emotions that come with it (Sounds heartless I know) but I don’t want Oliver to always have his meds to deal with his condition, and shut it out, and also as the meds, suppress his appetite by no meds it gives him a chance to eat and gain so much needed weight, and eat me out of house and home lol.
I know there are some children that needs meds all the time otherwise they don’t cope and I am not against that, but as Oliver grows up he needs to learn and understand his conditions and he has to be the one in control of them, learning the times he needs meds, and what feelings come with things, One thing I wish I could understand and help him with but is something I will never be able to understand, only understand how I see it not him.
As a child grows up you need to begin to let go a little but still help and support and I would never allow Oliver to do something that would cause him distress and harm.
Even tho last week was quite chilled this week is starting on a different foot, Oliver is either coming down with an illness or he is beginning to fear the return to school. Such a shame if this is the case as he still has a week to enjoy but for our children the fear of school can cause us massive problems. It can ruin a day out, holidays from start to finish as the child knows they have time off but they have to go back to school at some point or it can be the other way around, the no routine and routine change from the no longer being at school in a structured environment knowing what will be coming next.
Well lets see what this week has in-store for us and also what will happen when we have the return to school.
Well after a week of hassle we had a lovely weekend, celebrating Oliver’s Birthday, he loved all his present and even took time to read the labels and see who they were from lol normally he just rips the paper open.
Oliver had a lovely time watching his first Reading game and is already planning his next one, they drew 1-1 against Huddersfield. He came home with a goalie shirt as well as the away shirt we had brought him for his birthday to wear to the match.
Oliver received lots of money for his birthday and he brought a new bike with it.
After taking a while to choose the bike we had halfords build it for us and it was meant to be collected yesterday, Oliver came home very excited that he would be getting his new bike and he waited for his dad to come home and then off they went to get the bike only to get there and be told they had forgot to build it. Yes I am not very happy and called the store manager to complain and I have to say I wasn’t happy with his explanation. I explained you can’t do this to children and not one who has Autism as they don’t understand. As you can guess we had the upset and meltdowns when he got back from the disappointment of not having his new bike. So I am hopping Oliver will be happier tonight and also get his bike!
On a plus note it is wheelie day in school today for children who haven’t lost golden time the last two terms and Oliver and his Sister haven’t lost golden time still and where able to take in the early Easter present of the stunt scooters (I couldn’t fit bikes in my tiny car 😦 ) to enjoy at school, so I hope the weather is nice for them.
I am hopping with this being the last week of term and the Easter holidays around the corner we might have a better week but lets wait and see.