Why is it ok for other mums to moan about the length of summer holidays but when I say anything it is deemed wrong just because my children are disabled?
There is no shame in admitting the summer holidays are hard.
Change of routine is hard.
Having no respite is hard.
Attending hospital when your other children are all off school and have to come with you is hard.
Lack of sleep is hard.
Dealing with meltdowns is hard.
Having to be nurse, therapists, teacher, entertainer and still cook and clean is hard.
Taking your child out in public is hard.
Pushing a wheelchair is hard.
Being isolated at home for so long is hard.
It is ok to have a moan. It is ok to feel overwhelmed and exhausted.
It does not mean you do not love or care for your children.
Never feel you have to be excited about seven weeks or more of having your children 24/7.
If your child or children were not disabled no-one would judge you for wanting a break or needing to vent so don’t struggle alone.
You are not alone at all. Hundreds of us are struggling with the same things.
We are struggling to take our disabled children out due to inadequate changing facilities in society. We are struggling to go out in public for fear our child will have a meltdown and everyone will look at us.
We are terrified of judgmental looks and comments. We are exhausted and isolated.
Keep going. This won’t last forever even if it seems like it right now.
Don’t feel you have to hide either. Brave the park, or the library. Try a museum for an hour.
It is not easy and I am right with you. I know how hard it is just to get outside your own door.
I know that everywhere is busy and noisy and the sheer amount of supplies you need for one hour is daunting.
Try. Even if you fail. Keep trying. Be brave.
Try being different like doing soft play on a warm day or the beach in Wellington boots? Go to the park before most families are awake or after dinner when it is quieter?
Remember it is ok to admit it is hard.
School offers routine and stability that for families with disabled children is vital. Respite is rare and expensive and not always even available.
Other families are not doing as well as you think by the way.
Facebook lies, Pinterest lies, your friends and family only share the good stuff. Remember that when you are having a bad day.
This will pass and school will be back soon. In the meantime plan some days out, make a picnic, be silly with the kids and breathe.
Whatever you do breathe…
This too shall pass.
You are not the only one struggling this summer and it is ok to admit that.