Additional/Special Needs parenting: Welcome to Holland, not Italy

The road to acceptance can be a long one for parents of children with additional/special needs or disability.  Some reach it quicker than others, some struggle to get there at all.  There are many stops along the way where we can get ‘stuck’…

PRE-DIAGNOSIS - WORRY

Is there something wrong? Are we just being paranoid?  What’s wrong?  Is it serious?  How do we find out?  Who do we ask?  Do we really want to find out?  Secretly, are we avoiding this?  Eventually, we ask, or someone else asks, and we start to find out… and it can take ages!

In our case, we noticed that James was not developing as fast as his sister had.  At first, we put it down to boys not always developing at the same speed as girls.  Then we had some hearing tests done (which James initially failed spectacularly… until we realised he had an ear infection at the time!)  Bit by bit things got ruled out until we finally got a diagnosis.

DIAGNOSIS - SHOCK

What does this mean?  We don’t understand…  So many questions…  How did this happen?  Was this our fault…  Blame…  Did we do something wrong?  Why did this happen?  Why us?  Why not somebody else?

Suddenly we are faced with the loss of the future plans and dreams we had for our child, for our family, for ourselves…  It all lies in tatters… It can be devastating, we grieve for what is lost…

When we received James’ diagnosis, he was only 2½ years old. It was a hammer blow to us all as we tried to understand what we had just been told; that James has Autism and associated Learning Disability (he has since gone on to add Epilepsy to his collection).  Looking back now, we realise that we were experiencing grief…

Parents of children with additional/special needs or disability will experience this grief, going through the various stages, maybe getting stuck on one of them (‘denial’ for example).  Sometimes, just when you think you’ve made it to ‘acceptance’, something happens that spins you back to the beginning all over again…

FIVE STAGES OF GRIEF

Denial/isolation– overwhelming emotions, inability to control them, fight or flight instinct kicks in… denial of the situation, blocking it out, hiding from it and hoping it just goes away.

Anger– reality and the pain of the diagnosis breaks through our denial, it can burn deep and cause us to lash out at those trying to help us.  It can be terribly destructive, and can and does cause relationships to fail… 56% of families with a disabled child have major or significant relationship difficulties or breakups.

Bargaining  – “If only we had…” trying to rationalise it, trying to regain some control of the helplessness and vulnerability we feel.  If we have a faith we might try doing a deal with God “If you make this go away I’ll…” trying anything to protect ourselves from the painful reality.

Depression– sadness and regret about the lost dreams, a deep sense of mourning for what is lost… coupled with a gradual and profound realisation that this isn’t going away.

Acceptance– not a gift received by everyone.  It’s not about being brave, but a gradual sense of understanding of the emotions that we are going through, of the changes that the diagnosis will bring for us, for our child, for the rest of our family, and a growing desire to move forward and make the best of things.  Things will be different, but they can still be OK… We are ready to embrace not what might have been… but what is.

Where are we going?

Italy or Holland (please read the short story by Emily Perl Kingsley at the end of this blog post).  We have experienced a change of destination, we’ve ended up somewhere we didn’t expect, or initially want, to go… how will we respond?  How will it affect us?

How will it define us?

Will we let this diagnosis be a negative drain on our lives?  Stuck at ‘Denial’?  ‘Anger’?  ‘Bargaining’?  ‘Depression’? So many are still there… where are you?  Or will we use this diagnosis as a positive inspiration for our lives?  Having reached ‘Acceptance’?  Embracing what is, rather than what might have been?  And if so, think about how… What are you going to do?  How will this define you?

We do not go through this alone; if we have faith, then God stands with us.  As he said to Joshua, he says to us; “Be strong and courageous. Do not be afraid or terrified… for the Lord your God goes with you; he will never leave you nor forsake you.”  Deuteronomy 31:6

I CHOOSE POSITIVE INSPIRATION!

James, Mark Arnold's son.

Me? This is James, and because of him I choose positive inspiration, I make a stand for it, that’s why I do the work I do… working full-time in additional needs ministry with Urban Saints and co-founding the Additional Needs Alliance.

I will not stay in denial, it will not define me. I will not stay angry, it will not bind me.  I will not keep bargaining, I will face the truth.  I will not permit depression to hold me, it has no power over me now.  I choose acceptance, I claim it.  I choose positive inspiration, for my son’s sake, for my families sake, for my sake… I am surviving the diagnosis. Will you join me? Will you join me??

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”  Jeremiah 29:11

Mark Arnold, Director of Additional Needs Ministry at Urban Saints. Arnold blogs at The Additional Needs Blogfather. This article was re-published with permission.

WELCOME TO HOLLAND

by

Emily Perl Kingsley

Copyright © 1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”  “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.  The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.  But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Mark Arnold, Director of Additional Needs Ministry at Urban Saints. Arnold blogs at The Additional Needs Blogfather. This article was re-published with permission.