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

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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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Return to school.

It’s always tough going back to school after the holidays, but even more difficult for a child with chronic pain and fatigue.  My daughter got up this morning and all ready for school but after a week off and being able to relax you would have thought she would be going in fresh and refreshed ready for the new term, instead she has gone in looking exhausted and like she has never been off.   We haven’t done much this half term either so to give her that time out she needs but still doing enough that we don’t lose what we have worked up to so far, a day at the coast, cinema and some homework and dog walking.

With this being the last term of school I am hopping the pressure might come off a little bit, no big end of year tests like last term and no projects, but we shall wait and see and if they do come along then we shall just face them head on like we have being doing since October.  Even tho Rachel loves the projects, she puts so much into them and they I am afraid to say take so much out of her, but then she wouldn’t have it any other way and she certainly wouldn’t put less effort into them.

Only time will tell this term on how things go for both children, lets hope it’s a good one.

 

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What a start to the week!

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 😀

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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When something goes right

A proud moment here, my son as you have seen from other posts loves football more than anything else.   To help keep in happy and active in the holidays he generally does a football holiday camp with Chelsea FC foundation, I have to say I loved them amazing coaches who go above and beyond with all children.  My son today was awarded the Head Coach Player of the week trophy today for giving it his all for the last four days.    He is so happy its unreal and really proud of himself and its helped his confidence today as well.  He always comes home having had a really good day, going over skills and then mini games in the afternoon, he’s always hot and sweaty from working so hard, but it shows that even with additional needs our children can still shine in a mainstream holiday camp.  He even does their invitation only club on a Friday evening and I am sure when he is back after half term he will go in with a little more confidence 🙂

 

Also on a positive note had to go to the GP for a referral to OT as school had requested it and the GP has done the referral for us. (yepiee) so now we need to see if we get an assessment with OT and possible help again.  So many issues there not just handwriting.

 

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