Being parents is hard.
Being parents of a child with additional needs is hard.
To be in a relationship whilst being a carer takes a lot of patience…
…patience that not all relationships have.
Parenting a child with additional needs takes an awful lot of your time.
As a result you don’t get to spend alot of time alone with your partner.
It can be difficult, it can be consuming.
You grieve for your partner in the same way you grieve for your child when they get diagnosis.
You feel sad for what could have been, what should have been.
It sounds harsh I know, but it’s true.
Any parent will tell you how much your relationship changes when you have a child.
You have to sacrifice a great deal and put your needs aside.
You do it instinctively because that is what is what parents do.
When you have a child with additional needs those changes become more apparent.
The biggest sacrifice anybody makes when they become a parent.
Gone are the days of spontaneity, gone are the days of staying up until the early hours watching tv together.
Somedays I get no alone time with my husband, somedays we don’t even have a conversation, somedays go by in a fog of sleep deprivation and stress and we haven’t even said hello to each other.
Sleepless nights from our child means I have to sit up in her room all night, some nights I don’t even get to go to bed before my child is awake.
It is hard….to try and be a wife, a mum and a carer.
There is conflict, like any other marriage, but ours is always Autism related.
First comes the guilt surrounding diagnosis, the denial, the blame.
Then the caring and discipline. The ‘you are too soft’, and ‘you are too tough’.
Sleep deprived bickerings debating who knows what is best to do.
The anger, the fustration, of my husband seeing me physically and emotionally exhausted, physically and emotionally hurt.
The guilt I feel that he has to work, that he can’t always be there when he’s needed.
The guilt I feel that he has to work after being kept awake all night.
The pushing and pulling of love and stress.
One day it makes us stronger, the next it pushes us apart.
Our whole life has been restructured.
So many changes have had to be made; our parenting style, our plans for the future, our careers, our finances.
So many changes happened; we lost friends, family, our day to day interactions, our social lifes….our energy levels, our sleep pattern!
Big changes, but not altogether unexpected when you become parents.
We have become peacekeepers.
We work together, without collaborating, to keep peace and to make it work.
The biggest change is how we perceive each other.
We have taken on new roles; we have become each others carer.
We have become each others support.
Our understanding of each other has increased, not through talking, but through our actions.
We do not let ourselves be defeated, we are there for each other; not always through a hug, or a gentle squeeze of a hand; but that glimmer of love, that nod of the head, that hint of a smile when things are getting tough.
We laugh, we all laugh, humour being our biggest tie. Humour being the bind of our relationship.
We are in a relationship, but we are lonely.
We watch our family, but are not always part of it.
Lack of understanding, time constraints, behaviour, being a carer, we are isolated from society.
We are different, we don’t fit in.
Our children don’t get party invites, we don’t either.
We can’t ‘just a hire a babysitter’. We can’t just go out.
It needs military style planning, weeks in advance.
It needs someone who understands and is willing to take on our role.
We constantly work at our marriage because we want it to work.
It is a fact that parents of children with additional needs are under alot of stress.
We don’t spend enough time together, one of us always has a child needing extra support.
But, as with any parent, we accept this is how we are and get on with it….
….with an occassional kiss and cuddle when time allows!