Why isn’t there more help and support out there?

Gem12

I am dyslexic, so is my husband and our Son has just been diagnosed at the age of 16 AFTER his GCSE’s. We had to pay £300 to get a diagnosis and after reading the lengthy report he should have had extra time in is GCSE’s and printed on purple paper. He is now training to be an Aviation engineer and in his exams he has been getting  distinctions but he can’t pass his English GCSE. He can’t go onto level 3 without it so we now pay for a special learning needs tutor. How Son is so upset. My husband has been bullied in the work place as people just don’t understand dyslexia. I want to tell my employers but I’ve not had a full diagnosis. In my job I’m supposed to have good numercy and literacy. I manage with the help of google! I just want to scream and shout as we are far from stupid but made to feel it everyday. Can anyone else relate please?? Why isn’t there more help and support out there? Especially in schools. I know money is a problem but every time we asked the teachers they said he was fine. We would have paid for the tests and I feel a terrible Mum now because I didn’t. 

Antonia_Alumni

Hi @gem12 welcome to the community. I am sorry to hear about this, please do not be too hard on yourself. You did the best you could with the information you were given from his teachers.

This may be of interest to you. Scope have recently launched a new service called Navigate. Navigate provides a six week programme of online and telephone support to parents who have a child going through diagnosis or have a child who has recently been diagnosed within 12 months. The aim is to provide parents of a child with a disability with emotional and practical support and help them navigate these early stages. It also gives parents a chance to talk in a safe space.

You can find more information by clicking on this link https://www.scope.org.uk/family-services/navigate or call 0808 801 0510

I am sorry to hear about what you and your husband are going through. Has your husband informed his HR department or his Manager about this? I can understand this may be frustrating, you may want to get in touch with British Dyslexia Association's helpline: 0333 405 4567. Opening Hours: Tuesday, Wednesday, Thursday and Friday from 10am – 15.00pm.

Gem12

Thank you so much for your reply. My Son is now under well-being and he see’s them every week which I believe is helping. 

Adrian_Scope

Hi @Gem12, I'm so glad to read that your son is receiving some support which you feel is helping him. 
How is your husband getting on with work now? Did he speak with HR? 

Antonia_Alumni

Hi @Gem12 that's awesome to hear Please keep us updated and if you have any questions, do let us know.

Gem12

Thank you so much Adrian and Antonia. My husband lost his job in the end. It’s been very hard. Because he hadn’t been in the job for over a year, they just said that they had to let him go due to downturn in the business. Dyslexic people have a way of working and my husband was a flooring contractors manger and had been for many years. He is highly skilled at putting quotes together and floor plans but he does it his way and some employers don’t like it and say it takes too long. The thing is there isn’t a floor layer  out there that doesn’t like working from his plans as they are always so accurate, nothing goes wrong on his jobs. They others have loads of mistakes. Because he showed the boss up they were cruel about his spelling. It was a small company so no HR. My husband now has a job at Apple and they fully accept his dyslexia as Steve Jobbs has it!!!!! My husband has ways been great with IT and used to show everyone up with putting calendars together Sharing information and using Word and Excel to create spreadsheets. He hasn’t started with him yet but will be a technical specialist dealing with repairs and hopefully going on to train people and then to go into the corporate side of things. Let’s hope things work out!! So sorry to go on. I just get so upset. Dyslexia has made  a grown man cry and my teenager Son worry about his future. All we want to do is work and pay our way. There needs to be more understanding out there in the workplace and schools. It’s ok to have dyslexia. 
We asked the school to test our 14 year old daughter and again they said she is fine. We have spoken to all her teachers. Hubby went a bit nuts and  insisted she be tested after they messed up our Son’s  education. They did in the end and even thought she doesn’t have dyslexia she does have Visual stress. She too needs a purple overlay. She wears glasses anyway but we have to have her tested once a year as she was getting headaches and tired reading. Now for the first time the headaches have stopped and she is reading much more comfortably. Again we have had to push.  
Thank you so much for listening to me. Just writing this all down helps! Xx

Doris_Scope

Hi

@Gem12

,

Sorry to hear about all of your issues.  Is sounds like you have had to do a lot of fighting for things that should have been put into place previously.

Thanks to

@Antonia_Scope

for mentioning Navigate to you.  I am one of the parent advisors for Navigate and as you said it helps putting everything down in writing.  It sometimes helps talking to someone too and that it what we are there for.  To provide emotional support and maybe provide a bit of direction if that is something that you need or want.

It's good to hear that your husband has now got a job in a place that is more understanding and that things are now being put into place for your daughter.  We may be able to support you in working with your son and beginning to put things in place for his training and English exam.

Hope that things get sorted out for you but remember we are here to support you in any way that we can.

Adrian_Scope

Hi

@Gem12

I'm so glad to hear your husband has a new job where they are more supportive of his needs, hopefully he'll settle in quickly and it'll be a better environment for him. 
It's a shame you've had to fight so hard for your daughter to receive testing but I'm glad that it finally went ahead and that the purple overlays are helping with her headaches and visual stress. It sounds like things are looking a lot more positive for you all which is great!

Do consider getting in touch with Navigate, as Doris_Scope said they may be able to support you with putting things in place for your son and his exam etc. 

Keep in touch and let us know how things are going!
Adrian

Gem12

Wow thank you both so much for your support so far. It means a lot. I will definitely have in look into navigate.  We are getting there. Thank you. X

Topkitten

Dyslexia isn't well understood as the level and effect are so varied. However, my daughter is dyslexic and in her 30's but when she was at school one teacher told us she was too stupid and lazy to do school work. It's difficult to do the work when a person cannot read off a whiteboard. There was absolutely no support then for the condition and no allowances made during exams. We had to pay to have her privately assessed and privately schooled but she never passed her exams. She is now happily running a gym because despite the condition she is very bright, she just has to make careful decisions about how she works.

Be grateful for the support that is now given, at least the condition is now well documented.

TK