Being a parent of two children with very high special needs has been a bit like being a square peg in a round hole – you desperately want to fit in, but just don’t.  OK, like other mums you’ve experienced the BIRTH thing, done the breastfeeding, changed pooey nappies, had broken nights; but that’s about where the similarities stop. 

I think it’s only now that we have a “normal” child that I’m beginning to realise just how much we have lived lives as square pegs. 

When I wheel my “normal” 18-month old around she is looked at for all the right reasons – people don’t need to feel embarrassed, or look away quickly, or stare rudely.  I don’t feel as if I am providing some sort of side-show or feak-show.  I can blend in to the crowd instead of sticking out like a sore thumb.

I can go to Playgroups or Coffee-groups and my child is doing what the other kids are.  She’s joining in, active, exploring, responding.  I can talk “mum-talk” with the other mums.  I have something in common with them now.  In the past I gave up on going to such things.  Why bother?  It was difficult for them and difficult for me.  I just didn’t fit in.

If I want to go back to work (part-time or full-time) I can, because my “normal” child can slot into daycare like a breeze.  She doesn’t need one-on-one teacher aide assistance.

People who used to make comments like, “Well, at least you don’t have to go through the teenager thing!” or,  “You’re lucky – my kids get into everything!!   (and were probably saying these things for all the right reasons – to make me feel OK) have got no idea how difficult it is bringing up a child with high special needs.  OK, my 18month old is getting into everything now, and I’m sure the “terrible twos” will be terrible.  But it doesn’t by any means outweigh all of the good stuff.  All the stuff we never dreamed we would see and hear a child of ours do.  Understanding us, talking, responding, noticing the pictures in the books, pointing, manipulating toys… the list goes on…

So where am I heading with this?  (I’m beginning to ramble!!)

• Parents of children with special needs have a tough job and do an awesome job. 
• It can be so difficult to “fit in”, especially if you don’t have any “normal” kids.  There may be times when trying to fit in becomes too hard, and other times when you are determined not to allow the special needs of your children stop life.  (I think this paragraph is going to require a whole blog-full of exploration!!!)

Often I feel as if I have a foot in both camps.  When our son is in respite for the weekend (another blog in itself!!!), and we only have our daughter, we are instantly your “typical family”.  When we go to church, we leave our son with a caregiver because he is so loud.  Again, we appear a “typical family”.  This can be very freeing.  Suddenly we “fit in”.  We are like everyone else.  But, we struggle with this.  Because it is not who we really are.  We aren’t a “typical family”.   J1 and J2 are part of our family too and have shaped who we are.

This is all something I am trying to work through – how to live life when you have kids with high special needs.  I’m sure that my thoughts and ideas will change over time.  But I think it is important to work through, almost to come up with a “philosophy on life” that fits the uniqueness of our family life, just as I am sure other families with children with special needs have to sort through living life too.