Asperger’s syndrome – a ‘hidden disability’

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School

This is the story of my battle to meet my son’s special educational needs, an ordeal lasting seven years, involving huge emotional stress and financial outlay.  I feel compelled to put this in writing, and hope it can assist other parents going through a similar battle and help the Local Authority understand how difficult it can be for parents who have a child with special needs.

You can read my story here: My battle

33 thoughts on “Asperger’s syndrome – a ‘hidden disability’

  1. Penny Siderides

    It’s World Autism Awareness Day today and I am reminded of Sema’s almighty fight to get Eral the support he needed and happiness he deserves. More funding is needed desperately to change the ignorance surrounding autism. Well done Sema for surviving the battle, refusing to accept that the experts and authorities had done all they could to help Eral when they’d clearly failed him. Your honest account of your experience with your young son with Asperger’s Syndrome is inspirational. Congratulations Sema on making a voice for autism.

  2. Amanda jootun

    I echo the sentiments above and commend Sema for her tenacity and strength in her fight for her son. you have done amazingly well Sema -you can be very very proud of yourself. Amanda

  3. Hatice Yalchin

    An amazing battle from an amazing mother, you never gave up and that in itself is admirable. What an enormous battle to get Eral the support he needed and now he is such a happier and more confident little boy. Your story is inspirational to all mothers out there that are experiencing the same thing. I’m so proud of you.

  4. meera

    You are an amazing mother with an amazing son……. your story is truly inspirational and will help all those parents out their with children who have special educational needs. Keep up the great work.

  5. Sibel

    An inspirational, yet astounding story. Don’t give up now Sema, there are other families that need your help with their battle to get correct provision and support for their children.
    This is your calling.

  6. Patsy

    I have had a very similar situation my daughter who is 12 years old has had a very very difficult time in primary and secondary school 7 years on with 3 requests for a statement a notice in Lou 4 years on school action a number of EP, SLP, CHAMS assessments all of which did not find what my daughters SEN and she was labeled as MLD and after giving up work and fighting my LEA I got the shock of my life in 2011 after independent assessment with the help of my now solicitor that my daughter was diagnosed with dyslexia,dyspraxia, dyscalcula, speech and language delay and possible asperges. After a second battle at tribunal after losing the fist battle and a very damage daughter in March 2014 we won her case at tribunal and my daughter now goes to an Independent Special School out of borough so far things are really good for my daughter and the family. We are a very battered family of the education system

  7. Nezihe Saffet

    Against all odds you never gave up as you know Eral deserves to be happy and to be treated equally and fairly. You are a wonderful mother and you have achieved so much you should be so proud of yourself. It is not acceptable that you had to fight so long and hard just to get Eral the education that he is entitled to like every other child. The government needs to have a serious review of its education policies and provide more resources for children with SEN so that there is Real equality for all. Good luck and congratulations

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  9. Gulistan Mehmet

    This is such a positive story which will hopefully help others to get the support they need.The parents are the childs advocate and a mothers love is such an important factor in the fight for their childs well being and getting support needed in life.Only a mother knows the full extent of difficulty and emotional stress that a child with a condition like this goes through.It is a very difficult/stressfull experience but we must fight on and not give up – the prize at the end is a happy and fullfilled adult in the future.Well done.

  10. So glad you’re enjoying my posts. There are quite a few other blogs/websites/forums in the area but the ones I often search are Special Needs Jungle, my autistic team/blog and WrongPlanet.net. If you google the key words (Aspergers/autism blogs/websites/forums), quite a few other alternatives come up. Hope that helps

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  14. I too have had many battles, not only with CAMHS to get diagnosis for my eldest daughter, but with the LA to get a statement for her (went to SENDIST and LA conceded at the last minute) and for my other HFA daughter to get a school place in an ASC unit and the right support. It’s a constant battle, because both girls are unhappy in school due to the school not recognising their needs. I had to move my eldest to another school which meant I had to submit an appeal for that too, because the first school refused to accept her difficulties and denied everything. I have had to pay for private support for them both due to state failings and that doesn’t even go into the false blame from ignorant and devious professionals, which became serious for my family. You can see some of what we have been through on my own blog, I have Asperger’s myself and am also battling regarding myself.

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  16. Dee

    I know how you feel my boys are now men, both got statements of sorts, oldest son is 30ty youngest is 18 yrs, I’d so much care cut due to complaint’s over boy’s negelance yrs and yrs out of school was disgraceful, distroyed there soul’s and mine watching the abuse, I’d tribunal’s no one would support my boys , I won all 3 tribunals and had placed the discrimination against children with special needs,because school wouldn’t do as judge ordered, all hell broke loose, care completely cut even though I’d a broken back lol these ppl don’t like to take prisoner’s lol now I’ve to gorgeous men with no care or support, as a mother I feel I’ve failed my children even though I tried my best it wasn’t good enough, maybe if I didn’t suffer from the condition myself I wouldn’t have been so trusting, feel my good nature was taken adavantage of I believed them when they promised to help my boy’s, now I worry about who’s going to look after them when I’m gone sounds terrible but I’m seriously disabled and the brace for broken back did more damage then good another part of care being cut off because of complaints about children now I’m needing to make them about myself how did this happen ” so I understand devious professionals, I hope you all get the correct diagnosis support for your darling family, kind regards Dee.

    • Thank you for your message Dee – it breaks my heart to hear your story. I can’t imagine how hard it has been and is for you as a parent but please don’t blame yourself – you have not failed; you have done you’re best to make sure your son’s needs are met but, as you say, professionals can be ‘devious’ and so good at undermining parents. My son has turned 14 and is about to go into year 10 – I have done my best to ensure he is supported but it is so very hard and I fear for his future as there really is very little for young adults with additional needs. I wish you all the very best and hope you find the right help and support. God bless you and your family

  17. Maya

    This is like reading mine and my sons own story except we had to fight for 6 years to even get a diagnoses. It is good to read that with the right school things turned a corner. My son goes to secondary school next year and I have already picked out a small independent for him to go to for the same reasons as you outlined for your so. I have been turned down a EHCP for my son despite him being a violent school refuser and being in danger of harming me or himself. He currently is attending school for 3 hours a day, how is that meeting his educational needs. Parents should not have to battle every day just to get an appropriate education for their child especially when life is hard enough for the child and parents already. I hope your son continues to thrive in life, well done and thanks for showing the light at the end of the tunnel x

    • Thank you for sharing your story. I totally agree, parents are going through enough without having to go through the battle with the Authorities. Although my son is very happy at this secondary school, I still have to go through the yearly battle to hold on to his support at his Annual Review Meetings and now face another battle when it comes to life after secondary school. It’s never ending. I wish you and your son all the very best.

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