Battles with understanding in the wider world.

I am completely peed off today after seeing the most disgusting status on social media.

One person was angry with a teenager where they lived after they had apparently press all the buttons in the lift, this lead them to think it was acceptable to put a status up on social media calling that person a ADHD XXX and a retard along with other things.    Thank goodness other people along with myself replied with this is unacceptable and the admin took the post down.  However …

Is this right that a person should use this wording for teenager?   whether they are ADHD or not just because the peed them off.  NO!!!!  We as parents hope and pray and spend so much time trying to change the racism against our children and their conditions to have someone use it so causally.

What concerns me more if they are throwing these words around like no business and have children then their children will also pick up on the misconceptions of these conditions.  This adult clearly has no understanding of these conditions and that will carry on as clearly they seem like they never want to understand them.   We still face racism in all sorts in this day and age and it really shouldn’t be happening.

So how do we as parents deal with this?

How do you education the ones who don’t want to be educated?

How do we make the future better for our children?

The answers to above I have no idea, other than to keep doing what we are doing in the hope that one day it might all change and make it a better place for our children as adults and future children with these conditions.  To keep smiling at the people who choose not to understand not to move forward.

 

The thing is my son amazes me every day with his look on life and how he deals with things and he makes me to proud.

Feeling heartbroken and defeated at the moment.

 

x

 

 

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Confusion and gathering information

OK, so we are awaiting and Education psychologist report to come through with in the next week or two to find out were Oliver stands to what support he might need for school in core subjects.   This is a long wait might I had,  while also awaiting an appointment with Occupational Therapy.  This weekend I choose to help Oliver more with SPAG at home, giving him his tablet to help him focus we did a page of fractions (Maths being one of his faves this wasn’t a problem)   However SPAG was another thing all together, we did one page and he didn’t seem to get it.  I don’t understand how his English Teacher can say there are no issues and he can do more complex work when at home he can’t do the simple tasks,  we did Prefixes, so nothing major and he didn’t get some of it.   We even did his spelling homework, now for this all I do it make Oliver copy out the words three times, just copy from a sheet to writing them down and he was missing out letters. It’s like this in his homework diary he can’t seem to copy things word for word he misses out so much.  So if he can’t do this for writing out his homework and copying things at home, how can he be doing it in school?  Why has no one seem to pick up on this?  The more I think about the more I think he is going unnoticed in Class.

I though I would do some of t his work to one help Oliver and two to show the Occupational Therapist his handwriting and letter forming as that is one main reason we are awaiting an appointment, now I wish I had done this for the Educational Psychologist too to have examples rather than just speaking about it.

Oh well lets await a report and see what happens from there, maybe if it comes back he’s fine I will show school the work at home, but then when I look at his school work I can see the same things in there.

Maybe some of his teachers just can’t be bothered to understand and work with him?  Some are fabulous tho and a true credit to the profession.   Maybe the unhelpful ones shouldn’t be teaching?

I guess time will tell on how things go and in the mean time Oliver carries on struggling and losing interest in school, the scary thing is this could carry on, unless something changes.

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.

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!

 

x

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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