Imagine this – you and your child step off a cruise ship and are greeted by a group of people in colourful clothes, holding signs, flowers and balloons. Some are playing musical instruments. They shout and sing joyously, “Welcome to the Land of Special Needs!”
They hand you flowers and give you a warm hug. Your child gets a balloon and joins the small group of children playing games together. Their laughter fills the air.
You look around – the cruise ship is pulling away! You panic, waving your itinerary in the air. You say, “I’m not supposed to be here, there’s a mistake! My plans are elsewhere.”
The group of people surround you, they say, “No, your trip’s been re-routed. You are here now. But look around at the beautiful flowers and amazing scenery. Pristine beaches, clear water. Not many people arrive here, it’s very exclusive. It really is paradise here.” Someone hands you a refreshing beverage.
You look around and are amazed by the beauty. You think, “This isn’t so bad after all.”
Contrast this with the way most people find out their child has a special need:
You’re in a hospital room, surrounded by grim-faced strangers in baggy grey scrubs, bright lights and beeping equipment. The strangers say and do things you do not understand. Medical jargon fills the air as they race to save your child. You are terrified that your child will die.
Or, imagine you’re sitting in a doctor’s office, and you know something is wrong. A doctor never invites anyone to sit in their office. Your pulse races, throat tightens and panic rises. Something is wrong.
There are countless variations on this theme. What they all have in common is the lack of control by the parent. For most people, this is what is really hard. We cannot control the situation and we cannot predict the future. These are basic facts of life, but when we encounter a highly stressful situation like receiving a diagnosis about their child, the lack of control and unknown are devastating.
What made the first scenario so appealing? You can see the landscape, you meet some of the people who live there and are welcomed warmly. You don’t have any more control than the other examples, but the support of other folks who have been down the road ahead of you makes it bearable. Those other people act as guides, pointing out information of interest, comforting and nourishing you.
If you are a newcomer to this land – I welcome you warmly. If you’re a long-time inhabitant, I greet you with a hug. Either way, let’s sit down, have a drink and spend some time together, sharing stories, laughter and tears. Household chores and worries can pile up while we connect. The amazing thing about the Land of Special Needs is it is built on human interaction. It is real.
To see it firsthand I just need to sit in my doctor’s office and talk to another parent of a child with special needs. I can see it on the playground, in my children’s school, or treatment centre. I see this anytime I’m on the internet. Social media has made it possible to visit countless inhabitants in this land; we share stories, laughter and tears. We understand what the other is going through in ways most folks do not. As parents of children with special needs we carry this with us. We know about the amazing scenery and wonderful experiences this land holds.
We also know about the darker side of this land through countless medical interventions, therapies, insanely busy schedules, quests for funding and equipment. We see the pain and tears – both our child’s and our own. These are the tropical storms and volcanoes of paradise. Some things we can predict, some just explode at any time. Sometimes this land can be dangerous.
As inhabitants of this land, we try to warn each other about this dark side, and how to avoid some of the dangers. We try to help each other as best we can.
If you know someone travelling in this land, please help them along the way. The traveller is navigating land that may be beautiful, but can be treacherous. Help lighten their load so they can focus on travelling. This may be offering to cook a few meals for a family facing a serious medical crisis, or offering child care, housecleaning, or laundry services. As a traveller through this land myself, I know how hard it is to juggle the endless demands of a household with a long journey through medical interventions, therapies, and sudden crises. I appreciate any help I get along the way.
If you are travelling in this land yourself, remember to rest on your journey. The Land of Special Needs is an amazing place, filled breathtaking beauty and dark dangers. You need to take care of yourself first in order to travel. Remember to rest, eat, and sleep. Do not take too much on your journey as your burden will already be heavy.
As a traveller through the Land of Special Needs, remember to stop and look around. Enjoy the scenery, and remember this really is an exclusive place. Not many people get to see the wonder of your child’s smile, laughter or sparkle in their eye. Take time to appreciate the beauty in it all.
Finally, please connect with other travellers. They will be your guides and support. Although they may never go through exactly what you have, they are in the Land of Special Needs too. It’s important to share with each other. They may help you, just as you help them. No one can do this alone.
Note: “Welcome to the Land of Special Needs” is my update on the classic “Welcome to Holland.”