Being 'That' Parent

Parenting a child with additional needs is more challenging than I had ever expected. The child's behaviour is challenging, the exhaustion is challenging, the physicality of parenting a child with additional needs is challenging but the most challenging aspect of parenting a child with additional needs is the reactions of other people.  

You know that it is not appropriate to go around saying 'the reason they are behaving this way is because they have............' Yet everything in me wants to shift the responsibility for their behaviour and, what may seem to an outsider, my lack of dealing with it appropriately.

A pen, a car or an item of food are thrown across a table, across a room or at an innocent bystander; hair is pulled; another child is hit and my reaction is to guide, rather than chastise.  Of course I give a firm 'no' and try to remove from the situation if appropriate but more rigid behavioural management strategies such as time out could be seen as rejection; physical restraint may be retaliated to; rewards are not understood and understanding/sustained interest is not sufficient enough to withdraw privilages. There are times when it feels like nothing works and having to leave them to cry it out on the floor seems like the only thing to do.  And then the moment passes and they calm down. You calmly explain 'we don't hit/throw/pull hair we need gentle hands' and the world is a calmer place.  Until it all begins again. And again. And again.

The looks that we are given - the tuts, the sighs and the stares cut deep and, on a difficult day, can make me feel incapable. So I often find myself leaving before things escalate again.  We gradually build up the length of time we can stay at places. I explain to trusted people that we may not be able to stay for long, that we may need to make a quick exit and apologise for being 'not all there'.  

Anything can trigger this cycle...a new room layout, unfamiliar sounds, unfamiliar faces, an unexpected visitor, an inability to find a certain toy, a new structure.....all of these things need to be addressed and the exposure to them needs to be increased gradually but it is a slow process.

Parenting a child with additional needs is more challenging than I ever expected.  It is also more rewarding than I ever expected.  You try over and over to work on something to no avail ..... And then something clicks.  There are changes in behaviour and increased ability to handle things - new situations, new stimulations, new people. Progress is made in ways you never thought possible and trust is developed.

 The most special, challenging, rewarding thing I have ever done is parent a child with additional needs. The journey is exhausting and is a constant learning process but, as a family of a child with additional needs, we are learning and growing together and are working out the best way to handle the situations we are in.  We are learning that additional needs are just that: additional.  Added extras. Different personality traits and a different way of thinking and being.  We are learning to be flexible and find our own ways to embrace additional needs.

The following is written about a birth child rather than a foster child but it still rings true. 

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 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.