It is Mr and Mrs ‘Our Autisms’ wedding anniversary today.
We have been married for 10 years.
…..and so much has happened in those 10 years!
It has not been easy.
I love my husband with 100% of my heart, but sometimes the stress, strain and sleep deprivation that comes with having a child with special needs, is hard and puts a strain on things.
Our first big hurdle.
We knew she had Autism.
We had already ‘diagnosed’ her ourselves, so it came as no surprise.
What did surprise us was the way we dealt with it….
….the way we grieved.
Harsh you might think? Grieve?
We did….for everything my girl may not be able to do…..to be.
Behaviour is difficult.
Behaviours are difficult.
Deciphering what is Autism, what is not.
Sometimes we differ. We disagree.
Sometimes one of us is not as patient as the other.
Sometimes we are just so exhausted we bicker about silly things.
We vaguely remember having lie ins.
Being pregnant we knew sleep would be disturbed for a couple of years.
11 years later we still sleep very little.
We cope. We have to. It has become normal for us….
….our bodies don’t agree!
We are tired.
We lack time together and when we do manage to sit down together, we fall asleep.
Nights out….what are they?
I am unable to go to work.
Childcare for children with Special Needs is hard to find.
Appointments are plenty and I would need time off. Alot.
I feel guilty that my husband has to work.
I feel guilty that I can’t bring money in.
I feel lazy.
It puts pressure on me, on him.
On all of us.
Mostly I am too exhausted.
I couldn’t work even if I had a job.
I have depression and anxiety problems.
So much stress, so little sleep.
Diagnosis, hospital appointments, endless form filling, background giving. Relentless repeating of your life story.
Sleepless nights from thinking you have forgotten to say something to a Dr or add something to a form.
Anxiety, constant anxiety.
Anxiety that your child may not be able to cope, may have a meltdown, may run. Constant panicking because you know they don’t understand danger.
An all too common trait in special need parents.
The feeling of loneliness. Helplessness.
Relationships are pulled to their very limits.
My attention is always on my girl.
Everything revolves around her needs, her appointments.
We have pulled through, and we will for a long time yet.
We understand each other.
We understand it isn’t easy, we know we won’t always agree on everything.
We don’t understand Autism, but we work through it for our girl and boy.
And actually….I wouldn’t change a thing.