Welcome to Holland

Chances are, if you have a child with a disability, you’ve had a chance to read Welcome to Holland.  Written by fellow parent Emily Perl Kingsley, she describes the shock of expecting one scenario, only to find that the flight plan has changed dramatically.  As a parent of a child with a congenital disability, it’s very similar.  You find out you are pregnant, plan to have a “typical” child, and discover you’re headed in another direction.  Maybe much different, maybe not so much.  Different, but not less.  Holland is beautiful in its own right.  But if you had planned on Italy, you might be in for a surprise.  The key is handling the news.  It’s hard news, no doubt.  Not many people plan to have a child with special needsSpecial needs adoption is different, yes.  But otherwise, there is a period of grief, of loss. We had it.  There’s no shame in it.  It’s different and unexpected.  Our grief wasn’t long for us.  I think being older parents, and having raised children who were adults, the news wasn’t so tragic.  We changed our flight plan pretty quickly, and can recommend some tips for new parents.

dad holding his son that was recently born with Down syndrome

Did you get the part where the airline attendant recommends putting your own mask on first, during the pre-flight instruction?  They’re right.  You’ll need to make your own health and well-being a priority.  If you can’t function, you won’t be as efficient and effective to help your child with their needs.  It’s hard to do, I know.  It requires planning and effort.  Teamwork from your partner, parents, family members, or community support.  It doesn’t take much time, but it is important to get out and get a breath.  Go for a walk, jog, or bike ride. Clear your head, and move your body.  Make sure you are eating good foods.  It will not only help you stay fit, but will help you stay sane ☺  

Do some research about your new location.  If you planned on Italy, you’ll need to pick up a guidebook for Holland.  Learn the new sights, and experiences.  Get to know the locals.  In other words, do a bit of research about your child’s disability. It’s not hard, with all the information on the internet these days.  Be careful to find trusted sources.  Search for experienced parents, online groups, local/state/national support groups, even people who were on that flight to Italy the same time as you were, and now find themselves in Holland too.  They are part of your “tribe” now.  They can help you discover all the new sights in Holland, and can even help you appreciate them more.

Don’t remain a tourist.  Get to know other supports outside of the tribe.  Meet the locals, the general population, and make sure they meet you…and your child.  Having supports, getting involved in the community, is critical.  You will meet people involved in education, politics, healthcare, and more.  Awareness of your child, and your child’s disability, is an important first step towards acceptance, and even inclusion.  People are used to what they are used to.  If you don’t introduce them to something unfamiliar, they won’t seek it out.  Step out of your comfort zone, and get involved.  As I told a friend one time, “You have to share, to help them to care.”

sleeping baby

Which leads me to my last point.  You don’t need to stay in Holland!  Once you have your base of support, look to other places to visit!  Start dreaming of Italy again, and how you can make it work.  Dream of all the things your child can do, be, and accomplish.  Find ways to make it happen.  Whether your dream is an inclusive school setting, sport and recreation, friendships, independent skills, employment, even living options down the line, figure out your travel plans to make it happen.  With support, guidance, faith and trust, you can travel almost anywhere you want to these days.  Things are changing for parents and individuals with disabilities, and expectations look different.  Our world is big, and small, at the same time. Make sure you and your child are a part of it.

Caleb going on an adventure - don't let any disability hold you back

Peace,

Karen


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