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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An ASD mind

How does an ASD mind work?

How can we enter their world to help them?

I don’t think we ever know, the reason for questioning it I guess is a small matter to me but massive to my son time and time again.   He was out with his football today and while playing with it his football has been popped, the devastation and upset this has caused and in the pasted is awful, as much as I can say don’t worry about it we can get you a new one, the hurt for him is awful we have had tears for a football.   He now doesn’t want to do anything and is downright miserable.

I guess when it’s their obsession and something breaks as part of that or goes missing they have to go through their own grieving stage. The broken football is now apart of a football display on top of his wardrobe and we await the arrival of the new football with the hope it will cheer him up.  With one football missing that isn’t to say he doesn’t have other footballs old ones which are still good to use but have been replaced with a newer model they are all in the cupboard awaiting to be used.   I guess the upset is over the fact that the popped ball is his newest one.

Anything with football that becomes old or broken tends to become part of his collection, unless he feels ready to let it go to another child, such as shirts, shorts and boots, but some remain apart of an ever growing collection.

I guess it is tough for us to understand their world, we can try as much as we like and we can help as much as we can but we never truly know what it is like for them to be them to live in a world they don’t understand, all we can do is love them and support them the best way we can.  In this case lots of hugs, listening and a place for the old football and a new one on the way.

Keeping on top of things

So after the nightmare of last year and communication with school not being at its best, things are slowly improving!  But it has taken a lot of chasing on my part which I can understand with SENCO’s having lots of children under the belt they can’t always remember to inform you of something with your child like you asked and sometimes they just need a gentle remember by you emailing them.  I always thought by doing this I was being a pain in the bum, constantly chasing them and felt like I was nagging.  But after a conversation with school last week I found that they don’t mind these little reminders and it’s easier to reply to and email on the spot than it is to remember to send one.

 

Lets see how things carried on this term.

When it all becomes too much.

I guess we can all have our good days and bad days with in life, but a mum of special needs can be tougher than most, the constant choosing which battles you fight and which you admit defeat, whether that be with health care, school or even your child.

The fear for the future from lack of understanding in certain conditions within the wider community, workforce, health care and the list goes on to the transition you have from child services to the adult services for your child.

There are lots of amazing support groups out there, whether is be a coffee morning to a Facebook group where you go rant and share small or big achievements have others understand these without judgement.  What would it be like to live in a world without judgment for disabilities, race, religion and the endless list, I am sure it would be a much better place.

Sometimes we can lose faith in everything thinking we have no where to turn and no one to support us, after attending a meeting with others yesterday and healthcare it seems that one department doesn’t really know how to work with the other and one project is going on in one area to make things better and another one in another area, if only they would listen to us and work together to make it smoother for children who struggle and their parents.

We can only hope with the awful Ofsted Inspection in our area that the local council listen to the report and parents in making the right sort of change, but maybe this goes higher than local and it needs to go nationally.  Some amazing parent groups are doing that but can their voices be heard on such a large stage were changes is felt is not needed?

So a big to all special needs parents, in fact to all parents, you do an amazing job all day and every day x

Finally!

So after emailing the governors of the school, who did email me back to say they would chase school and I will get a reply directly, you guess it weeks on and still no reply.  I emailed the head of their academy trust, her PA got back to me to say they would look into things and arrange a meeting a day later a meeting is set with the head of the trust and the school!  So in 3 days we have had a meeting arranged but still nothing from the school in question. But not the head of the school isn’t facing us, why would he do that when we can’t even reply to a letter, so we have the pleasure of the deputy head!  I am ready to fight but having a feeling school will turn things on us and say we are over reacting to everything.  still no surface so that is now 8 weeks on so a whole term in there!

 

Feeling happy about a meeting finally but still feel we have a long way to go with them and things won’t ever change!

 

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School Report Time

When school aren’t responding to your letters and your son’s school report gets sent home and even tho you are so proud of him and his amazing report, you feel the need to reply to school with your comments on it!

Well I am in the middle of typing such a letter, just doing this blog for a break from it and help the emotions calm down for a clearer calmer letter, none of the teachers seem to understand Asperger’s syndrome or ADHD and even motor dyspraxia.   So a letter of gentle reminding is needed, I am sure this will be another unanswered letter, another thing for them to ignore and another failing on their behalf and who’s the one left suffering Oliver.

Oh well I guess I should get back to it.

 

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Enough is enough

When you sit down and take stock of things and think nothing is going to change and you need to push even more than you have, after emailing the head teachers of my sons school  at the end of April with no reply I have now typed a letter to the board of governors at the school.  I will be sending that off today and then we shall see what happens from there, if nothing then I shall go to the head of the partnership as the school is an academy and then I shall do department of education local and then national.   I have also done a parent ofsted questionnaire 🙂

Still no surface for my son with his handwriting and that is a term no now, don’t hold out much hope for next term either, having to go to the GP for a referral to OT as school don’t want to do it as they will be made to support and do something by being told  to go online for resource and support.

Shame as my son isn’t the only SEN child they are failing.

 

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