Crafted by Mummy – My Etsy Shop

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Heart Pendant
Heart Pendant
Rose Quartz Bracelet
Rose Quartz Bracelet
Yellow & Black Wrap Bracelet
Yellow & Black Wrap Bracelet
Goldstone Pendant
Goldstone Pendant
Labradorite Bracelet
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Black Onyx Pendant
Black Onyx Pendant
Handmade Blue Floral A5 Traveller’s Notebook
Handmade Blue Floral A5 Traveller’s Notebook
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Handmade A5 Butterfly & Rose Traveller’s Notebook
Shabby Chic Junk Journal
Shabby Chic Junk Journal
Dragon Eye Pendant
Dragon Eye Pendant
Alice in Wonderland Shabby Chic Junk Journal
Alice in Wonderland Shabby Chic Junk Journal
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Unakite & Copper Heady Pendant Necklace
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Jasper Pendant
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Pink & Green Shabby Chic Soft Cover Junk Journal
Self Care Junk Journal, Soft Cover
Self Care Junk Journal, Soft Cover
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Natural Agate Pendant
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Flower Pendant
Handmade A5 Faux Leather Traveller’s Notebook
Handmade A5 Faux Leather Traveller’s Notebook
Jasper and Silver Pendant
Jasper and Silver Pendant
Pink Roses & Butterfly, Shabby Chic Junk Journal
Pink Roses & Butterfly, Shabby Chic Junk Journal
Single Wrap Purple Bracelet
Single Wrap Purple Bracelet
Heart Pendant
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Labradorite Necklace Wire Wrapped Pendant | Mini Pendant Necklace for Women | Copper Anniversary Gift | Labradorite Cab Necklace
Labradorite Necklace Wire Wrapped Pendant | Mini Pendant Necklace for Women | Copper Anniversary Gift | Labradorite Cab Necklace
Large Labradorite Statement Pendant Necklace
Large Labradorite Statement Pendant Necklace
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Agate Cluster Bracelet
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Pendant
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Alongside my blog, I also have an Etsy store which helps me in supporting my son. Please take a look and let me know what you like best.

The Reality of Living with Special Needs

The Reality of Living with Special needs - an iceberg - by Rambling's of an Autism Mum

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

                      

Tales From Mamaville

 

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9 Comments

  1. 5th December 2018 / 12:06 am

    Reading this made me feel a bit sad. You shouldn’t be feeling guilty or worried that you’re not doing enough. It sounds like you are doing a brilliant job in challenging circumstances.

    Housework can wait, no really it can!!

    As for the pile of laundry…arrange it into a pyramid, chuck a bit of tinsel at it and place a star on top and call it an alternative Christmas tree!! #Itsok

    • Lyn Haslegrave
      Author
      5th December 2018 / 12:40 pm

      Thank you so much for your kind words! I love the laundry pyramid idea…….may just have to try that! #itsok

  2. 6th December 2018 / 3:25 pm

    [* Shield plugin marked this comment as “trash”. Reason: Failed GASP Bot Filter Test (checkbox) *]
    Oh love, I can’t even begin to imagine the challenges and difficulties you go through as a parent of a Special Needs child. But please don’t feel you are failing your child (though all us mums feel that at some point, don’t we?). You are doing the best you can in the toughest of situations, and things like housework and laundry can wait. You are doing a BRILLIANT job! Just remember, #itsok

    PS: Thanks for linking to my Mummy Cheat-Sheet; glad it helped you

  3. 6th December 2018 / 4:42 pm

    I hear you. I have 2 boys with additional needs. sending hugs

    • Lyn Haslegrave
      Author
      10th December 2018 / 9:54 am

      We need to stick together. It’s a rocky, but completely amazing journey. x

  4. 7th December 2018 / 11:14 am

    Oh love, I can’t even begin to imagine the challenges and difficulties you go through as a parent of a Special Needs child. But please don’t feel you are failing your child (though all us mums feel that at some point, don’t we?). You are doing the best you can in the toughest of situations, and things like housework and laundry can wait. You are doing a BRILLIANT job! Just remember, #itsok

    PS: Thanks for linking to my Mummy Cheat-Sheet; glad it helped you

    • Lyn Haslegrave
      Author
      10th December 2018 / 9:52 am

      Thank you! I really needed to hear that. Some days are better than others – right now, things are slightly more difficult but, you know what? #itsok We’ll get through it, we always do. Having people there, supporting us really helps. x

  5. 8th February 2019 / 12:02 pm

    Being a woman, I know the difficulties and the stress level one goes through but he thing we need to be able to do is conquer that fear and keep moving to make positive changes in our lives. You have to get yourself into a frame of mind where you come face to face with the fact that your life is short and that you ought to be successful in this shortest time.

    And Mindfulness is the energy that helps us recognize the conditions of happiness that are already present in our lives. We don’t have to wait ten years to experience this happiness. It is present in every moment of our daily life.

    Take a chil-pill and move on.

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