The Reality of Living with Special Needs

I’ve been posting quite a lot about how we cope with Pathological Demand Avoidance but, you know what?  I’m not sure that we can really describe it as coping….. The reality of living with special needs  is far removed from what we actually allow the outside world to see.

Each day, I feel like it is really kicking our butts, that we are not making progress and, in fact, are going backwards!

For the last few weeks I’ve completely failed to get my son to even get as far as the car park of his educational placement.  How rubbish is that?!  In reality, this isn’t surprising but I wont go into details here.  Needless to say, it’s not me that’s failed but the system that’s failed my son.  Does this make me feel any better?  No!

Rose tinted glasses…..

I had all these great ideas as to how I was going to approach life.  What I failed to realise was that we do not live in an ideal world….

I know what we SHOULD be doing but that is very different to ACTUALLY doing it….

So….what exactly do I mean?

I was going to be the perfect working mum.  I was going to have a clean house, an up to date laundry basket, all food was going to be healthy and cooked from scratch and I was going to work on my business.

Rose tinted glasses removed…..

Well, reality is a little (ok hugely) different!

Clean house?  Yeah….righto!

Up to date laundry basket? errrr…… the pile, at this moment in time, would give Mount Everest a run for its money!

Healthy, home cooked food?…..I started off fantastically but……

And work?  Well, when you have a child that:

• wont attend school
• has severe separation anxiety
• wont stay with anyone else
• has no concept of danger
• doesn’t understand that interrupting phone calls isn’t his best plan

……actually working on your business is a bit challenging.  Thank goodness for residual income!

Life gets in the way and rarely turns out as we would expect.

The reality of living with special needs

Cleaning

Cleaning the house doesn’t really happen at the moment.  I spend half the time wishing for visitors and the other half hoping that no one pops in as the house is a mess.  I’m like a rabbit frozen in the headlights of a fast approaching car.  There is so much to do and I just don’t know where to start.  So…….I find myself doing nothing.

Laundry

I’m fighting a losing battle with the laundry.  I’m managing to keep my daughter’s uniform washed but, when you have a child that tidies up (ok so tidies up might be a bit optimistic) by just throwing everything in the laundry basket, the dirty clothes pile grows quicker than I can cope with.  Its got to the stage where the clothes that are thrown on the floor in the bathroom stay there because, if I pick them up and put them in the laundry basket, I’ve got to wash them!  How sad is that???

Food

Food?  OMG where do I start with this one?  There are so many nasty things put in our food today that I’ve become a bit of a healthy diet crusader.  But, and its a big but……. I’m having to turn a blind eye to certain things.  It is really challenging to provide a healthy diet when pork, beef, chicken, lamb, green veggies etc wont be eaten.  I used to love spending Sunday mornings baking and meal prepping for the week ahead.  Now our diet consists of beef burgers (only beef that will be eaten), sausages, bacon & gammon (only pork that will be eaten) and chicken nuggets!  Potatoes will only be eaten if they are “chippy tattas” and veg in general if it is yellow!

Yes, I could make two different meals but, at the moment, its all I can do to cook one meal.  One day I found myself  actually cooking 4 different meals!  How crazy is that?  So……you know what?  We often (very often) have baked beans or tinned spaghetti and, the only stipulation put on it is that they must be “no added sugar”.

I’ve recently read an amazing post by Nicole of Tales from Mamaville called The Mummy Cheat-Sheet.  It’s amazingly practical and realistic and my new go to bible for surviving.

Hidden from view

For people that do not live with special needs, the reality is probably far removed from what they imagine.  We can keep the balls in the air for so long but, when an extra one gets thrown at us, they all come tumbling down.  This happened to me fairly recently, click here to find out what happened.

To the casual observer, we will look fine and appear to have everything under control (not quite in my case lol….), but scratch beneath the surface and it will all come pouring out.

Guilt consumes us……

• did we try everything
• is it our fault
• are we bad parents
• if only we’d fought harder for help at the start…..
• I shouldn’t have said that
• Why did we do that

I don’t know about you but I even feel guilty just for taking a shower.  Why?  Because there is so much to do and a shower takes up valuable time!  Ridiculous, I know, but it’s a real thing!

Iceberg!

An iceberg is such a great analogy!  To me, it represents the reality of living with special needs. The persona that you present to the outside world is just the “tip of the iceberg”.  What lurks beneath, hidden from view, is the reality and it is far more expansive than what is visible and it is very real.

Until next time, stay strong.

Lyn