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Guest post: Born with a difference

camptyscamptys Posts: 10Member Listener
edited 3:03PM in Guest blogs
This guest post was written by Andrea Campbell, who has created 'The Pocket Learner' - a learning system for children with learning difficulties.

When I learnt that it was highly probable that my child would be born disabled I did not entertain the thought.  Instead I hung my hopes on the 10 percent that she would not be affected and I carried on as normal.  Then she was born, somewhat blue and limp – my worst fears were realised - she had Down’s Syndrome (later she was also diagnosed with Autism).

Andreas daughter playing with pocket learner

'I didn't want to fight, but I didn't lose hope'

For parents just given this diagnosis there appears to be no happy ending possible.  I remember being told by medical professionals that she would never be able to conduct transactions in a bank – in essence, don’t expect too much!  I lost all sense of bravery; I didn’t want to fight, but I didn’t lose hope.  I internalised my pain - in public pretended that everything was fine, in private I cried.

Those of us who are trusted with the responsibility of bringing up a disabled child understand the rollercoaster of emotions that presents.  We are not braver than others; that’s the hand we’ve been dealt and we have no choice. Our children struggle to gain acceptance from their peers, adults and society in general.  Being unable to negotiate the public sphere independently, our children miss opportunities for social skills development and relationship building.

As social welfare cuts take effect, our children have less access to public services, fewer play schemes with the required level and quality of staffing to support them, less speech therapy as well as occupational therapy, less choice of schools and minimal support to attend appropriate schools which may be out of borough. 

My little girl has impacted not only my life but that of our family and many of her peers, far and wide.  Since she was born 10 years ago I started my own social enterprise enabling vulnerable Picture of the pocket learner learning system - book and cardspeople to develop skills and find work; I wrote and published two non-fiction books; co-founded a social enterprise to support disabled children and their families living in deprived communities across the globe and we developed the Pocket Learner - an innovative multi-award-winning educational resource for young children, especially useful for children with special educational needs.  This resource is now available to children everywhere and it would not have been created had my little girl not been born.

The need for support

People who care for disabled children need support and shouldn’t have to fight for it.  By adding stress to the gamut of issues we parents face daily we run the risk of destroying the family support structure for the most vulnerable in our society.  There are people who dream of a world free from disability but thank goodness, it is not in their power.  When we choose to ignore the plight of families with disabled children we are no better than those people, for we know what happens, “when good men do nothing”.

For all those families struggling with children with special needs – physical, cognitive or otherwise, I encourage you today.   Like all children, your child is a blessing and you have been especially chosen to safeguard, edify and inspire this blessing to have high aspirations.  Maintain a positive attitude; love your child and he’ll love you back.  Know that you have a unique opportunity to embark on a journey that money cannot buy.  Grab this opportunity to impact and leave a legacy! It is not easy but it is special, and wonderful.

Would you like to share your experiences of raising a disabled child? Let us know your thoughts in the comments section below.

Replies

  • bendigedigbendigedig Posts: 136Member Talkative
    My son, like me has an Aspergers Diagnosis.

    His ability or lack of ability is vastly different to those that your own child experiences.  His issues dont alwYs seem very apparrent.  Nevertheless he can be very vulnerable somtimes.

    All I want to say is,  my son, my wife and Myself have been let down by an uncaring and corrupt local authority and the associated infrastructure there in.

    My wife and I are profesional people.  We know the people who have treated us in this way.  We have complained to the highest auhority and seen our concerns treated with contempt.  My son was assaulted by one of his teachers. We have been lied to treated like dirt and have seen no justice whatsoever. 

    If you want to make a difference for your child you either need to be

    1 very fortunate and have good people working for your childs education and welfare (not common)
    2 be wealthy
    3 have very well apointed connections

    if you dont have either of the above three things in your life then things are going to be very difficult.

    im aware that the conditions that your daughter has are more apparent and more afecting than those of my son...  And I think that your efforts to "do something" for her are tremendous :)

    Spare a thought though for all the people out there who are barely getting the basic Requirements for their children no matter how hard they protest.

    there is some really bad stuff going on out there.  Not all of us are able to print childrens books and swim the channel for our children.... Its not that we wouldnt... But the lack of supoort help and assistance for the parents of children with complex needs is somtimes very alarming.  Im not just thinking about our own experiences either.  we know of other families that have encountered similar and somtimes worse experiences than our own in our Local Authority alone.

    often the "service providers" try to transfer "blame" for bad situations on to the parents themselves!  Somtimes even conspiring to initiate social services investigating the childs home life!!!   

    Until we had been through what weve experienced with our son, i thought that the Problems encountered by the Hillsborough victims and the establishment cover ups and corruption were just isolated instances.  Now I believe differently.

    Britain is in my opinion a failing country if not a failed one.  Incompetence, negligence and inapropriate appointments due to nepotism is rife.  Much is covered up and people suffer daily.

    i have not typed all this because I am a Neigh sayer.  I have typed this because these are true and honest experiences. Ive said it because it needs to be said.

    im sure that there are excellent Local authorities in Britain, somwhere?  I know that there are excellent committed coscientious and congruent child care and education practitioners in britain too.  It has to be said though that many children and thier parents are being let down on a daily basis often only to be blamed by the very establishment that they complain against.

    i dont expect that it will get any better.  Not in the short term at least.  Things are going to get far tougher.  Especially when we finally leave the EU and revert back to the Unregulated Tory regime that we will be stuck with till god knows when.
  • DannyMooreDannyMoore Posts: 199Member Chatterbox
    I have Asperger's Syndrome and it has complicated parts of my life because the society won't accept people with differences. The problem I've encountered most is abuse. At times the society abuses me so much that I get obsessed and distracted from life.

    The police always refuse to protect me, they just leave the society to it. They take rights and freedom from me because there's one of me but lots of them. Just to make the police do something I have to legally delay their emergency line by sacrificing myself, risk been assaulted. They don't view threats of violence as emergencies, the police will not come until someone's hurt. 

    That's another problem with this country, the police don't aim for justice. They take rights away from the society's targets serving the majority, even when the majority's in the wrong. People with perceived differences are all living as targets. The minorities are always treat unfairly and bullied/abused, the society can't accept differences. 
    Don't Fear Your True Self
  • bendigedigbendigedig Posts: 136Member Talkative
    @DannyMoore

    You are so right about this.

    the Police Service is only a Barometer though as to how those that run our Country view thier responsibility to manging our society effectively.

    Their blatant negligence and incompetence is beyond reproach and or forgiveness.  I often wonder if the ability to effect any change lies within the hands of the people any more?

    I wonder if we will ever see a time again when peoples individual rights matter?

    How have things gotten so bad in my Life time?  I thought that the idea was to advance society not allow it to regress into a feudal, corporate free for all?
  • DannyMooreDannyMoore Posts: 199Member Chatterbox
    @bendigedig

    I've mentioned on some other posts that the only way to get the police to help someone in a minority is to fight the police to lure them to your side. I was a victim of hate crime last year and the police just kept saying, "they're having a joke".

    3 months passed and all the police did was tell me to stay in my flat. In order for them to give me my rights back and deal with the hate crime, I told them as well as holding up the emergency line I will report them to every organization that's relying on them to prevent it, report them to prime ministers and the landlord.

    They knew if I brought all these other parties into the crime things will get messy for them.
    Don't Fear Your True Self
  • bendigedigbendigedig Posts: 136Member Talkative

    @DannyMoore

    you have my total sympathy and respect.  

    danymoore, i could tell you some stories, not just about the police.

    I am a whistle blower.  I spoke out openly against corruption where I live.  Amongst other wrongs that have been perpetrated against me and my family since I spoke out have been a physical asault perpetrated against me the loss of our work both my wife and myself but worst of all the institutional bullying of my 11 year old Aspergic son in his previous Primary school.

    Nobody is safe in our society now.  Just like when they were under Thatcher the police will be afforded the opportunity to get away with blue murder as long as they toe the government line.

    All branches of the civil service are no longer geared towards public service they are now geared towards public control.... Of course the easiest people to control are those that are vulnerable to bully boy tactics.

    people need to wake up and unify against this real threat to our saftey and our civil rights.

    I consider myself part of a wider growing number of people who are seeking to unify against the threat our government and its corrupt infrastructure are posing towards our safety and civil rights.  Disability does not mean that we are push overs does it?
  • joannarashellejoannarashelle Posts: 120Member Chatterbox
    Hi @camptys just read your post about your child,

    incredulous that the 'medical professionals' said your daughter would 'not be able to conduct transactions at a bank', this DOES NOT mean she cannot live and enjoy a happy fulfilling life!

    I cannot comfortably conduct transactions at a bank.. too much stimulation too much noise etc etc so I use the cash machine when it's evening.
    (I'm on the spectrum)

    But I CAN play the piano from memory after hearing a piece of music once, can feel if someone is unwell even before they get a diagnosis, had poems read out on Radio 4 when I was 9, know when there will be a thunderstorm by the change in the atmosphere before anyone else and can read dogs. 


    I know this may have been just an example they were giving to you, to suggest your daughter may struggle with everyday activities and indeed she may.

    But there will be SO MANY things she WILL be able to do, that maybe the medical professionals could only dream of doing. 

    I wish you and your daughter best wishes 


    Joanna x 
  • izaiza Posts: 136Member, Community champion Chatterbox
    Hi @camptys
    Thank you for sharing your stories, 
    You are very brave parent not only stayed strong for churning up child with disabilities but motivate yourself to do lots to educate you blessed one. 
    It is incredible that you also created the Pocket Learner. It is fascinating that parents do not give up on brining up child but also try to change the World around their children illness. 
    You are incredible. All the best for you and your family especially your daughter. 

    Iza 
  • camptyscamptys Posts: 10Member Listener
    iza said:
    Hi @camptys
    Thank you for sharing your stories, 
    You are very brave parent not only stayed strong for churning up child with disabilities but motivate yourself to do lots to educate you blessed one. 
    It is incredible that you also created the Pocket Learner. It is fascinating that parents do not give up on brining up child but also try to change the World around their children illness. 
    You are incredible. All the best for you and your family especially your daughter. 

    Iza 
    Very much appreciated Iza,  

  • izaiza Posts: 136Member, Community champion Chatterbox
    Hi @camptys I just need to say sorry for the misspelling instead "churning" it should be "brining" :) Iza
     
  • joannarashellejoannarashelle Posts: 120Member Chatterbox
    You're welcome @camptys

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