If you don’t have a child with learning disabilities, please read on to understand more.  This is our reality.

If like me you do have an offspring with learning disabilities you’ll experience life very differently to the rest of society. 

Dear Parent,

How are you doing today?

If we haven’t met before I’m Jen’s mum, occasionally known as Sue.  Today I consider myself one of the luckiest parents alive – yes, honestly, that’s 100% true – but it hasn’t  always been like this.  Born with Down’s syndrome Jen has opened my eyes in countless extraordinary ways.

This learning disability awareness week we ask Do you see me?

Do you see people with learning disability?  Over 1.5million in the UK alone

Do you see the disabled family?  Coping with numerous challenging complications

Do you see the carer?  Striving to keep their heads above water, and to support every family member whilst often neglecting themselves.

Deciding to embark on family life changes everything for everyone.  When Jen was born I felt I had no choice but to support her wholeheartedly to the best of my ability.  She hadn’t chosen to be born with Down’s syndrome.  But it happened.  In that moment I began the rest of my life.

A person with a learning disability is so often overlooked, invisible in full sight.  But what of you?  Do all except your closet friends make incorrect assumptions about your happiness and wellbeing?  None of us choose to be seen as failing, as not coping, so each morning we get up, make the best fist we can of our caring and parental duties, put on our smile and face the world.  Some days it’s easier than others.  Sometimes you just can’t hide the challenges and the hurt metered out.  We too are human, mere mortals.  We can only ever do our best.  But the ‘system’ expects us to cope, rather requires us to cope or it would collapse completely.

What does it do to help?  Who helps us?  Offering us the chance to go and share a coffee with others in the same predicament never cut it for me.  A 30 minute drive each way, finding somewhere to park, sharing a couple of hours ruing the status quo with others brow beaten by the system was never my idea of a good time.  I needed to get away to be my own person, to follow my passions and interests whether making music with friends, walking in the mountains, or sailing on the ocean.

So I duly spent a desultory day filling in a carers assessment.  Have you ever done one of these?  It’s as thankless a task as any of the other nonsensical bureaucratic forms we’re expected to complete.  The social worker thanked me.  I asked what would happen next.  I was told that it would be filed.  That’s it.  That’s the brutal reality.

There is something incomprehensibly irrational about a system which relies upon you yet undermines you at every turn.

But rather than meekly accept the response we turned to the law.  It seems we did have a right to respite, real respite.  Jen was to be offered time away in a place of the authority’s choosing.  We didn’t find this acceptable.  Eventually they agreed the support could come to our home so Jen was in a place she knew and able to continue her regular activities, supported by someone else rather than me.

We got there in the end, and made sure respite happened each year.  But what nonsense!  Are you, the carer, able and prepared to fight long enough to be seen?

If you’re not seen you’re not on the radar, and if you’re not on the radar you’ll be taken for granted for the whole of the rest of your life.

Each of us needs to fathom how to thrive to survive.

Mum and daughter

Thanks for reading.  If you like this, our blog will furnish you with much food for thought, all as a result of having Jen for a daughter.  My life is unquantifiably richer not in spite of learning disability, but because of learning disability.  If this isn’t already the case for you, I hope my writing will give you renewed energy to find solutions, to problem solve in creative ways.

From the desk of a humble parent, nomadic by choice

Sue