Monday, May 2, 2016

So, I’m A Parent to a Child With Special Needs. Now What? | Encouragement and Advice

Hi there.  Welcome here.

First and foremost, I get it. You’re running as hard and as fast as you can to a finish line you can’t see. It feels like no matter how you run, you’ll never catch your breath again.

I’ve been there. Some days I’m still there.

With three children, all of whom came to be mine via adoption, all of whom had a diagnosed or undiagnosed medical need, my family has run the gamut of all-things medical.

My eldest’s medical need was surgically repaired, but he requires ongoing therapy.  My younger two have “severe” medical needs and although they are remarkably healthy, they have required a much more intense level of medical intervention.

I’ve learned a lot over the years. Most of the lessons have been hard-fought, many have been accompanied by tears. These have been my lessons. You’ll learn yours, and when you do, I hope you’ll share. But, I also wholeheartedly agree with Brene Brown when she says that the two most powerful words when we’re in struggle are “me too.”

Here’s what the years have taught me:  

Act like your child’s advocate, not their doctor.  
Being your child’s advocate is your job. It might be a job you didn’t volunteer for, but it’s your job nonetheless. Work it like a job.
  • Be professional. Show up to appointments on time. Bring the necessary records. Call when you’re running late or need to cancel. 
  • Be kind. Be friendly and polite to the medical staff. Make friends with them, not because you’re trying to manipulate them but because you need friends. You will see some of these people more often than you’ll see your own family and you will need them. They will squeeze you into the schedule. They will go out of their way on a Friday afternoon to fax the referral that’s already been faxed 5 times one last time. They will fuss over your kids and claim “no problem” when you accidentally dump the entire contents of your purse on their desk while you rummage for your phone so you can book your next 12 appointments.
  • Be an expert. Know everything you can to know about your child’s condition. Read medical journals. Study websites. Learn. You aren’t going to have time for any of this - do it anyway. Don’t be afraid to speak up. To ask questions. To get multiple opinions. To ask your doctor about the research. Take your child to the best in the field. Switch doctors when you don’t like the standard of care. But also let the doctor be the doctor, not because they have the medical degree but because it’s their job, not yours.  

Remember that being a parent of a child with special needs doesn’t make you special.

Having a child with medical needs can be lonely and intimidating and, if you let it, it can consume you.  Don’t let it.

Your child’s needs are just a part of who you are. A big part – yes - but only a part. Some days your child and their needs and the big looming questions and the uncertain future will take up all of the space in your brain and in your heart. It will simultaneously suck you dry and drown you - but don’t let that alienate you from the people around you.

Your child has a rare condition. Many doctors will only have a vague understanding of the medical terms you know.  The majority of people call going to three medical appointments in a single day a once-in-a-lifetime occurrence. You call it a Tuesday.

But even when your circumstances are unique, you’re not. Everyone only has a certain number of moments in the day, everyone has to get money in the bank and dinner on the table and everyone loves their child with a heart that beats to break.

Join online groups. Find a special needs support group. Have someone you can vent to and relate to. But don’t lose the people around you.

Learn how to be a parent, not just a caregiver.
You’re now a parent and a caregiver.  Moms and dads provide care when they change diapers and give bathes and clean puke, but your role goes beyond that.  

You’re a pharmaceutical dispensary, a home therapist, an insurance specialist (and yes, you will spend so much time on the phone with the insurance company that your ears will bleed) and medical transporter.

But you’re also a parent.

Take the time to appreciate your child’s impossibly long eye lashes. His impish grin.  His irrepressible sense of humor, even in the face of disaster.

Love your child like only a parent can.

Appreciate that things really do improve with time.
Your child’s prognosis may not improve, their condition may be debilitating and deteriorating and these are hard, hard things. There are no rainbows here.   

But some things do get easier with time. Time, for better or worse, means more experience, more practice, greater perspective.

With time, things will feel less intimidating for no other reason than you’ve already done them. Hospital visits will never feel routine, but you’ll only ever have one first hospital visit. 
You’ll learn where to park and which waiting room has free coffee and there will be solace in knowing these things.  

Savor the unexpected gifts.
Kevin Kling, citing Dante’s use of the word “Dis” in literature, explains that “disability” doesn’t mean un-ability but rather that it means “able through the world of shadow and reflection.”

That is such a gorgeous definition. It’s such an apt definition.

Your life from now on will be one of shadow and reflection. Claim that. Hold on to it. Seize the gifts it brings.

What is to give light must endure burning. - Victor Frankel


  1. This is the best yet....I say that all the time and I mean that every time.

    1. You set the bar high for me, friend. Thank you!