For this edition of our "Diary", my coach Julia who specialises in Additional Needs, writes a blog.
She shares her personal experience of parenting a child with additional needs through the lens of a Poem called "Welcome To Holland" - Regardless of if you have a child with additional needs, I'm convinced it will give you much to reflect on.
“ You do see what I see, don’t you?”
These were the words spoken by the radiographer doing my 16 week scan at the ante natal department 30 years ago.
My husband and I had gone for a routine appointment as we prepared ourselves to welcome our first baby. Only there wasn’t one baby on the screen, there were 2 !
I think it’s the only time I managed to laugh and cry at the same time and my poor husband was utterly speechless.
After discovering that I was entitled to extra iron tablets and a big red “Twin Pregnancy” sticker was put on my notes, we went on our way to the nearest pizza place to recover from the shock.
Little did we know that our lives were to be changed in a very big way. We began to think of everything in duplicate and looked forward to an ever increasing waistline and decreasing bank balance. But we didn’t care, this pregnancy had been very much wanted and both our families were looking forward to the arrival of grandchildren (at last)!
What has all this got to do with Holland?
After an uneventful pregnancy, our identical twin girls arrived prematurely at 30 weeks. They arrived within 3 minutes of each other weighing 2lb 11oz and 3lb 7oz, and that's when everything changed...................
There was no cuddling them and getting to know them as they were taken straight to Special Care, and to our dismay we were soon to discover that they were to be moved to another hospital a couple of hours later as their 2 incubators were needed!
In special care one twin seemed to be doing OK but the other twin didn’t do so well and she was struggling. They had twin to twin transfusion syndrome and the smaller baby sustained some brain damage resulting in her being diagnosed with cerebral palsy.
Over the next few years we became part of a very different world than we expected to be.
There were lots of appointments,
emergency trips to A and E,
a house move and adaptations,
wheelchair accessible car to buy
and so on.
For families like us the experience of raising a child with a disability can be a mixture of emotions and feelings that affect us all in many different ways, it is often compared to a bereavement when we mourn the loss of that “perfect child” whatever perfect means.
About 10 years after the girls were born I came across “Welcome to Holland” written by Emily Perl Kingsley, the mother of a son with Downs Syndrome.
She likens the experience of parenting a child with additional needs to packing your bags for a well planned trip to Italy, but ending up rerouted to Holland instead!............. "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"..................
The metaphor is that the trip to Italy is a typical birth and parenting experience, and that the trip to Holland is the experience of having and raising a child with additional needs. In the end the reader sees that although it's a very different place and you need different guide books, after being there for a while you begin to see that the “trip” is still well worth it -
"Afterall, Holland has windmills, and tulips and even Rembrandts"....................But everyone you know is busy coming and going from Italy, 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".................
“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”
So, I have been in “Holland” for many years now, 30 years in fact, and have travelled a long and interesting sometimes worrying and anxious journey. With my girls now approaching their 30th birthday I've recently been reflecting on that journey and my time in Holland...................
No, it’s not the way I imagined or hoped my life would be like, however I'm now settled here in Holland and have had time to adjust to the different path my life has taken and I have much to be thankful for.
We have 2 daughters that we love very much and are proud of them both for different reasons.
Being the sibling of a child with disabilities isn't easy. There's been, I'm sure, many challenges for her too over the years, but my able bodied daughter has always been a most caring and thoughtful child, never demonstrating any resentment of the attention her sister received over the years or feeling reluctant to bring friends home.
She is now a special needs teacher (not much of a surprise!) and last year presented us with our first grandchild who at 16 months old just loves to be with her aunty and today toddled up to my daughter's wheelchair and wrapped her arms around her aunty’s legs.
When I deliver the parent groups for parents whose children have additional needs, “Welcome to Holland” appears in the parent handbook. When we think about and discuss our emotional response to our situation, there are often a few tears that week, but that’s ok, most of us never expected to be in Holland because we had planned and prepared for Italy!
Many parents (not all) find it a lovely piece and puts into words what their feelings and thoughts are around parenting a child with additional needs.........................
I'd encourage to you read it, even if you are in Italy, because maybe you can help the travellers in Italy make it a place that is more welcoming and supportive of the travellers in Holland