When I first did my pregnancy test I looked at the result and I was happily surprised – I was going to have a baby! Okay it was a surprise, but what a wonderful surprise and I couldn’t have been happier – I was ready and I knew I’d be just like Mary Poppins and have a brood of kids and it’d all be wonderful.

10 years, 2 months and a few days later and It’s still a wonderful surprise every day, but it turns out that I’m not Mary Poppins and I’m definitely sticking with two kids… (just goes to show dreams aren’t always what they seem).

Yet I still dream, and I still sit and wonder what the future holds; will it be weddings and grandchildren or will it be a lifetime of caring for my child because he doesn’t feel confident enough to go out into the big wide world alone?

No matter who we are, no one would choose to have a special needs child; it isn’t something we choose and yet it isn’t something I would change, not ever. However, that doesn’t mean it doesn’t hurt, and it doesn’t mean that I don’t worry about the what if’s, and it doesn’t mean I am not grieving. 

Grief is a funny thing. We all assume grief is about the loss of a loved one, a dear friend, family member, or even a pet. But we never think we can grieve for things that we haven’t ever had, “better to have loved and lost”. However, we can also grieve for the loss of what we wished for, loss of what we anticipated, the loss of things dreamed and hoped for. The grief a special needs parent goes through follows all the usual steps. Shock, denial, anger, bargaining, guilt, depression and acceptance.

Shock

My shock was attributed more to other’s reactions than the diagnosis itself. I was fine with getting an ASD diagnosis as like many mums I felt I knew deep down anyway, and the report quite simply confirmed what I knew and gave me the answers that I needed to back up my suspicions.

Denial

I haven’t suffered any denial yet (she says in denial) but I attribute this to the fact that I was expecting it anyway so the confirmation was more a relief than anything else.

Anger

Yep we can tick this box! I’ve been all over this one but again it is more related to other people’s reactions and behaviours than the diagnosis itself. 

Bargaining

Yep I’ve done this, I’ve made deals with myself. If I ace parenting then there is absolutely no reason whatsoever that the future can’t be all wedding bells and grandchildren… sadly I’m not acing parenting, so this could be a tricky one!

Guilt

Oh boy the guilt… Is it because I didn’t know I was pregnant and drank too much on holiday in those first crucial weeks? Is it because I vaccinated with the MMR? Did the fall down the stairs cause this? Is it because he had reflux so we didn’t do enough tummy time? I must have done something wrong; someone has to be blamed and I am the only person who grew him, nurtured him, fed him, and vaccinated him.

Depression

Yep, been here too, but again this was caused by other people’s negative influences, the rejection from school, the rejection from family and friends, and those who felt it was a lack of discipline – but most of all the guilt. Someone has to be blamed and failing all others, we can only blame ourselves…

Acceptance

Whilst I accept the diagnosis, he is still my baby and he hasn’t changed and no labels will ever change him. What I can’t accept is the way other people treat him and the fact that many look at my child and see disability and not Oscar… I don’t think I will ever accept that.

As parents, we want nothing but the best for our children, nothing but an amazing future, love, health, wealth, in fact, whatever they want or need and a lifetime of happiness. Yet as a mum of a special needs child I daren’t take anything for granted. Every child including mine has a right to the same things in life as his or her peers – however, that isn’t always the reality.

Over the last 18 months we’ve had so many obstacles to overcome that I haven’t had time to even think about the future. I haven’t really had time to digest a diagnosis of High Functioning Autism (Asperger’s Syndrome) and what that might mean for everyone in my family moving forward.

I’ve read over the last few months so many books, websites and articles to try to help me get my head around what we are dealing with and how best to support my child. I’ve invested so much time trying to smooth things over and I’ve negated to give myself time to think, time to get my head and feelings around what the future may hold. It wasn’t until I did a recent interview and was asked exactly that “what does the future look like?” that I realised I was too scared to think about it. Not because I don’t think it will be amazing or that I am not capable of supporting my child and not because I don’t love him, not either because I won’t be there for him or that I’ll even find it too hard, but because – if it doesn’t look like a Disney movie, what does it look like?  Will I get to be a granny, to see him walk down the aisle, celebrate his passing his driving test, or see him become a father?

What does the future look like?  I honestly don’t know but what I do know is that whilst I may be sad about what he may not have, or what I may not have, I know that for as long as I have Oscar and Maisie the future looks bright and full of surprises. We celebrate and love so much of our lives and we are so lucky to have the life, love and laughs that we have. I didn’t ask for a special needs child but I got one – and I wouldn’t change him for the world. 

Written by British mum Andrea Jane Guy

Read more:

My Story – Oscar and Autism by Andrea Jane Guy

Living and Learning about Autism

10 things you take for granted having a normal child