• Replies 3 replies
  • Subscribers 68 subscribers
  • Views 563 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

I need someone to hear me

camden

My five year old son was diagnosed with an ASD over a year ago and he is still nonverbal. He is hyperlexic and is able to spell and read over 100 words.  I just moved my whole life by moving countries in the hope that things would be better here in the UK.  I attended a meeting with the head of his new school and the SENCO there, where they are taking the initial steps for speech and OT. 

I feel so emotional and I'm in tears as i write this, i guess its the relief of finding other people who understand what I'm feeling.  The frustration isnt with what m son is.  I think he is beauftiul and part of his beauty is his autism.  Today the school recommended that since he would only be there part time then I should attend as his teaching assistant or I was given the option to bring home some sensory things and work with him myself.  For some bizarre reason this rattled me in the wrong way and it has left me feeing vulnerable.  I guess the main reason is that the statementing is in the hands of others and the decisions the make would have such a great impact on our lives.  I dont believe in inclusion, especiall not after today.  I hold nothing against the school, as it just shows how unprepared most schools are. 

 

I've worked with my son at home for over a year and a half now, and he made great progress! Home-schooling is something I'm seriously considering however I am worried that I might not get government help with speech and langauge/OT and all the other things that they might offer through another special needs body. 

If you have any information regarding home-schooling or anything else, please pass it on! I'm so glad I found this forum today.  I've spent the last hour reading your posts and will probably spend the rest of the night with your stories.

 

  • Hey IntenseWorld...wondering if you've had any experience with hyperlexia? My son is nonverbal in terms of covnersation but a spelling fanatic.  Thanks :)

  • Thank you for your response.  I'm actually from Britain but was outside of the UK, working and living when I got the diagnosis for my son. Unfortunately for me, many of experienced therapists in Egypt where Arabic speaking so I had to make the decision to return back here.  I never knew the UK from the point of view of having a child with needs and so this is a new and shocking experience.  

    I will contact IPSEA.  Thank you so much for the advice. :)

       

  • Sadly this is what the UK is like.  I think there is still a belief among foreigners coming here that the "streets are paved with gold".  We are a small island with a high population, we have high immigration.  We have a stretched and struggling NHS, funds are being cut all over the place, schools are not autism-aware, services are all stretched and avoid giving help where they can.  Services are also very reactive, so often it's not until a family is already in crisis before they can perhaps get help.

    The school are clearly fobbing you off.  They may even be acting outside the law.  You can apply for a statement yourself through your local council, but it is getting harder and harder to get one.  No-one polices what services are supposed to be doing, it's pretty much pot luck.

    Everything you need for your child, you will need to fight for, that's been my experience and that of many other parents.  Unless you happen to live in a fantastic area with loads of funding and low drain on resources, that's the reality I'm afraid.

    You could contact IPSEA for advice or your local Parent Partnership organisation.