My son is 8, he has severe learning difficulties and needs help with every aspect of daily living.
I think back to the early days of realisation that my child would be disabled – the grief, the despair, the loneliness, the anxiety, the depression.
There was so much crying. Crying every day.
Tears from me, tears from my husband, tears from grandparents – so many tears.
We felt so lost trying to get our heads around disability, special needs – this whole new world.
A world of appointments, therapy & therapists, doctors, nurses, social workers, hospitals, child development centres, specialist equipment.
The letters, endless letters. So many letters he needed his own filing system.
So many people having an opinion on my child, our parenting, his development.
Being talked at. Not being listened to.
Sleepless night from worry.
Sleepless nights from reflux.
Googling. Scaring myself witless.
Understanding, ‘the system.’ I didn’t even know there was a system.
It was exhausting. I was exhausted.
I rarely left the house, friendships suffered, family life was non-existent.
Then slowly but surely things began to get a bit better.
There was a distant light on the horizon.
I got better at navigating ‘the system’.
He got the equipment he needed to make things easier.
We discovered techniques and tactics to deal with the challenging behaviours helping us get out of the house for longer periods of time
Medications that helped with the reflux.
We learnt how to pick and choose our battles.
I formed good relationships with the people I now accepted had to be involved in my son’s care.
We had another child.
He started school. I went back to work.
Not quite the normal I’d imagined but all fairly normal.
We enjoy family days out, we go camping, we spending time at home, visiting friends and grandparents.
But I always have this little knot of anxiety that never really leaves me.
You see I read stories about adults with learning difficulties living in care.
I see mums and dads in their 60’s and 70’s struggling with their adult children with disabilities.
Bigger, heavier equipment.
Bigger, heavier children but with exactly the same needs as my 8 year old.
More difficult to dress, more difficult to manoeuvre, more difficult to care for.
I have friends whose children are transitioning in to adult services.
I try to lend a sympathetic ear, provide advice and support.
While a voice inside my head is saying, ‘Is this what we have ahead of us?’
So although I am enjoying this time, this period in our lives I do wonder is this as good as it gets?