Becoming a Special Needs Parent, Welcome to Holland
Imagine you’re planning a trip. A long anticipated trip to Italy. You’ve spent years hearing stories of the far off dream world and spent countless hours imagining the adventures you’ll experience there. You’ve arranged everything and made plans with wonderful Italian friends and those travelling there, too. It’ll be great, you just know it! But when you arrive you realize that plans were changed for you. The plane landed in a completely foreign place and there you must stay.
This situation probably seems frustrating, disappointing, maddening, lonely, overwhelming, exhausting and maybe even unfair. The truth is that special needs parents often feel this way when getting a diagnosis. If you’re in this position, you’re not alone.
So, rewind to 2010. I was a young mom with a one year old daughter and a little boy on the way. I was unaware of just how much my life would change. My 18 week anatomy scan didn’t just confirm my little ones gender, it also brought the news of his “birth defect”, a bilateral cleft lip and palate (BCLP), something I had never heard of or considered.
While preparing for his birth I joined many support groups and soon discovered the beautiful poem, Welcome to Holland! It hit me hard! Since then, I’ve referred back to it as my 3 children were diagnosed autistic and passed it on to other moms of special needs kids. It’s a must read!
The poem was written by a mom who was asked to describe what it’s like to have a child with special needs. It also easily applies to having a child with medical problems or you yourself having similar issues.
She speaks about going on a trip to Italy. You plan your trip, buy all the books and learn the language. Everyone is excited to go to Italy. As you’re about to land the flight attendant announces that you’ve arrived in Holland.
Wait a second! Did she say Holland?!
Yes, you’ve indeed landed in Holland, a foreign place you were unprepared for.
You learn a new language, buy new books, meet different people and see things you wouldn’t have seen otherwise.
This new place isn’t what you expected. Everyone is raving about their time in Italy and you may even feel jealous of their journey. The thought of what might have been can ruin the beauty around you and if you focus on the adventure you wanted in Italy, you’ll miss how wonderful Holland is.
So that’s the gist of it.
Make sure to get your free printable version of this beautiful poem.
So What Does That All Mean?
So you’ve planned and prepared for one journey and ended up on a completely different one. You’re forced into a life you didn’t plan on. You’ll probably feel like this sucks and life isn’t fair. You’ll probably question “why me?” Maybe even ask who’s to blame for the life changing mix up. Was it someone else? Or maybe it’s my fault we ended up here? (just a little free advice, don’t play the blame game, it only ends in tears and table flipping). No mater how it happened, you ended up in a foreign land and your life wont continue as you planned.
Extra Work
Yes, getting rerouted to Holland means you need to do extra work, it will be harder, at least for a while. You need to learn an new language and different customs. You need to stretch yourself and make new friends. There’s a great deal involved in adjusting to your new surroundings. It’s ok to be the new arrival in a strange place. It’s ok to ask for directions and help as you navigate a life you didn’t plan on. The extra work will feel lighter as you grow stronger.
In real life the extra work might look like:
Taking longer to feed a baby with special bottles or equipment
finding funding and working out coverage and healthcare
spending all your free time cutting out PECS for your kids therapy, or cutting supplies for your cleft child’s NAM
spending hours upon hours in appointments
time spent finding therapists or specialists
finding friends who “get it”
driving your child to a special school
working your butt off to help your grade one child say “Mom”, while the other moms sit back and rave about the 4 languages their children speak (giant eye roll)
Gratitude
I’ve loved this poem for many years and it’s message inspires me to appreciate whats in my life now. An attitude of gratitude is where it’s at.
My parenting journey has not gone as planned, and little in my life has. When things seem like too much and the little green monster of jealousy creeps in I try to focus on the little blessings around me. Even the littlest things can brighten my day. Find and appreciate small wins and moments of peace and joy.
Your child picking out their own clothes
New foods being eaten by your beyond picky child (maybe it’s just a different brand of chicken nuggets, you autism moms know what I’m talking about)
The woman who smiled at you in the grocery store
The hot coffee or ice cold water in your hand
Three out of four kids brushed their teeth last night
Your child sat through 3 pages of a story
The hospital is close-ish to your home so you don’t need to stay in a hotel the night before a surgery
You went an evening without a call from the principal
Grief
Grief doesn’t always refer to the death of a loved one, grief over what could have been is a real thing. Experiencing the stages of grief after a child’s diagnosis is perfectly normal and shouldn’t be ignored.
Coming to terms with loss doesn’t have an easy, wave a magic therapy wand, kind of solution. A loss is a loss. Give yourself permission to grieve and adjust to the new situation you’re in.
Italy Isn’t All That
Yeah, I said it. Italy isn’t the end all and be all. In the poem everyone was going to Italy and you landed in Holland. It seems like Italy should be the preferred choice. Don’t assume that life in Italy would be all sunshine and rainbows. As I’ve gotten older and been more aware of the lives of others I’ve realized that everyone's journey is different with it’s own unique challenges.
With that said, I’m fully aware of the cushy paved path which some travellers find themselves on. I’m also painfully aware of those who’s rerouted journey landed them in a place resembling war-torn Syria. So I guess this goes back to gratitude and appreciating where you are.
Distance Makes a Difference
This is something I’ve been thinking about lately with this poem. In the poem the analogy is not only about changing expectations and coming to terms with a different outcome, but also being separated by distance and the differences in your surroundings. I think this totally makes sense for raising children with special needs and medical problems.
In the poem you didn’t end up in Italy where you wanted to go, which is disappointing, but whats more upsetting is that your friends and family may have ended up in Italy without you.
In real life this could look like:
Not going to mommy and me classes because of medical equipment
Your friends stop hanging out with you because your child “misbehaves” or is a “brat” (cringe)
Days are spent in speech therapy, OT, physio, psych and medical appts or at the hospital instead of social outings to the zoo.
You avoiding Thanksgiving dinner at a relatives because your child cant handle the different circumstances
Team sports are out of the question and you miss out on those communities and friendships
You spend holidays alone with your child and immediate family
Your siblings or friends don’t understand and/or aren’t sympathetic to your difficulties
It’s near impossible to get a babysitter for your special needs kid so you end up missing out on dates, girls weekends, work events, etc.
You feel alone in your struggles and experiences
So many situations can separate you from those who ended up in Italy. Those with “perfect” and healthy kids, those who coasted though and didn’t need to learn a new language, or relearn what and where to go. But the distance doesn’t need to be permeant. Yes, things are different and you’re coming from different places, but sharing experiences and closing the knowledge gap can really help.
It’s also really important to make new friends and create a new family of special needs parents. If you’re in “Holland”, make some friends who are also in “Holland”. Those who are in a similar situation as you will be a life savor and God send to help you.
Ultimately, I love this poem because it points out so many challenges facing special needs parents. It also encourages and inspires those same parents to look for the beauty around them.
Having support and making friends in this new place is crucial. You aren’t alone in this journey! Countless others have found themselves alone and stranded in a strange land, their own Holland. They were once lost tourists, the new kid. Heck, it doesn’t seem long ago I was the new kid. But good news! You’ve stumbled on a community of supportive women and men who have also been rerouted. Welcome to Holland! We’re your people!
Hello!
I’m Kate and I’m a mom of four. Since 2010 we’ve had one baby born with a bilateral cleft lip and palate and three children diagnosed with autism. Parenting certainly hasn’t been what I was expecting - it’s been harder (like A LOT harder) and much more wonderful. My world has expanded and knowledge deepened as I’ve spent the last decade raising these four special kids. Supporting other moms of autistic and cleft children is my passion. Here you’ll find information, strategies and first hand experiences to help you navigate these special challenges on-the-go and in your own home.
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