Additional Needs
I don’t want the care. I need it.
by Sharon F
on 29th April, 2024
A Guided Tour Around A Special Needs Home
We are happy and comfortable to read about the lives of people we went to school with while in reality we would hardly speak to them if we met them in a supermarket.
We seem desperate to know that other's lives are either similar to ours or worse in order to make us feel better.
People are even more curious about families with special needs children.
Some see parents of such children as somehow deserving of some sort of sainthood (many of them are!) and they seem to assume we never get frustrated at our children and our homes are organised and beautiful..after all we are home all day!
I am about to shatter all that by giving you a tour of my home!
I have two children with additional support needs. I am a full time unpaid carer surviving on as much sleep in one week as you get in one night! This is my home, my workplace, my holiday location, my therapy clinic and my meeting room.
Welcome.
The first thing you may notice is my garden is very mundane. I can't afford a gardener and just getting time to cut the grass alone is impossible.
Like so many things it just isn't priority any more.
Before you reach my front door you will see extra railing and supports. I can not tell you how long I had to fight for those. It does make it 'obvious' my children have extra needs but I assure you I don't ask for that extra attention.
My family attracts enough attention already!
The pile of shoes in the porch may be more than you think is needed for just four residents. Sensory issues mean my daughter goes through footwear like others eat hot meals!
Even if one pair fitted great yesterday today they are now too tight, too cold, too hard, or too small! If we want to leave the house she needs something she will wear and this can take a while to find!
There are many odd shoes there too. Her brother has thrown many out of the car in protest and one day when I have nothing else to do (that might be a while away yet!) I will sort through them.
Most people learn to just walk on by. Actually many walk on by US in life too.
Welcome to my lounge. Lines of toys on the floor is normal here; as are boxes of toys.
My children need supervised at ALL times so playing in their room is not an option when they have seizures, eat everything and throw things constantly.
I honestly have no idea when we last decorated. We don't do change and pictures cover any marks.
That fresh smell of air-freshener disguises the latest round of smearing or the last meal I burnt when the children needed me. The blinds are permanently closed as otherwise we have continuous non stop screaming due to open doors.
Welcome to the noise of you tube, flapping, and screaming, all drowned out with the sound of the same button on an electric toy pressed continually for the last hour.
It gives you a headache? This is my permanent state of affairs most days!
My kitchen is some sort of cross between a laundrette and an eat as much as you like buffet. When your child is so distressed by the noise of the washing machine he turns it off every time you turn it on..the laundry soon mounts up!
When your other child is so restricted with what they will eat you have to sometimes prepare three meals before they will even take a bite..the plates of food soon mount up.
The stair case has two hand rails.When one of your children has no sight in one eye you have to ensure they can see the bannister when they go up AND down.
The bathroom...oh dear, the bathroom! Water attracts my children like some powerful magnetic force.
Yet it must NEVER EVER touch their hair!
For children who are yet to master potty training they seem to have a strange fascination with the toilet. I could write a book about all the things I have fished out of the bowl so far!
Talc is another sensory experience they seem to love...yet never on their skin! The smallest room can be the most difficult to keep tidy!
The bedrooms are locked. They have to be.
My son has 'fed' his sister's fish too many times now...nappy cream, plastic trains, entire tubs of fish food, and a hairbrush being his last attempt!
My non verbal son climbs on windowsills but has no concept of safety.
He smears. He strips off...and he throws everything everywhere.
You may be coming to meet with me, but bear in mind this isn't a clinic or a private meeting room.
This is real life!
This is my home. This is where we hug, we cry and we learn together.
Life is messy, loud and complicated. My home reflects that.
I hope you enjoyed your tour. You are no doubt ready to rest and return to your normal.
This is my normal. This is home.
This is life with special needs children.
