Why Being a Special Needs Parent Isn't Something to Fear

I overheard two expectant mamas talking in a Chick-fil-A play area. They sat together on one bench, while their 3 or 4 year-old boys played together, and they each were expecting a boy. I watched my own two boys play with these soon to be big brothers.

These mamas chatted about pregnancy woes and pediatricians. And then the conversation took an unexpected turn. One of the mamas confessed that she’s constantly having fears that something will go wrong with the baby. It even keeps her up at night. What if her child has a disability?

And the other mother agreed, saying that she worries about it too and she pities those who have a child with a disability or special needs.

Stunned by the statements made, I looked up at our four boys all playing together. One of mine was flapping his hands and humming to himself, but following the other boys in their little game. My other son was anxiously chewing on his shirt rather than his chewy necklace, unable to answer the other boys’ questions, but having fun being included. Yes, both of my boys have special needs. And yes, it is hard having children with special needs, so I could see why these mothers’ fears and thoughts were valid. I too considered how hard being a special needs parent would be before I became a parent.

I watched each of those boys playing in their own unique way together, wanting to say something to these worried mamas but a whirlwind of thoughts swirled in my head and I didn’t know what to say. But here’s what I was thinking:

When you realize your child has special needs, yes, you will grieve. You will cry. You will fear for your child’s future as well as your own. But your love for your children won’t lessen once they get their diagnoses. In fact, your love will grow fiercer, stronger, more purposeful. You will love your child selflessly, with the reward of their smile, their giggle, their snuggle, them finally saying or signing or typing “mama” or “daddy” on a device being enough to keep you going.

You will Google each new diagnosis, find new blogs about it, order books about it, find therapists who know how to work with it, call insurance about services for it, find online support groups for it, etc. It will initially feel overwhelming and exhausting, but you now have the opportunity to learn new things you wouldn’t have even dreamed of researching otherwise, and it allows you to meet people you never would have encountered otherwise. Before long, you will be educating others with the things you have learned.

Life will be harder, more stressful and exhausting. Your schedule will be filled with appointments rather than play dates. Your phone contact list will be filled with more therapists and clinics than friends. But being a special needs parent will change you for the better. You will become stronger, more determined, more resilient, eyes opened to a world you hadn’t experienced before. You will become not just an advocate for your own child, but for others like your child.

You and a slew of therapists will work with your child to teach them how to do something that comes naturally to other children. You may work on these skills for months or even years, or maybe never see them happen. But you will celebrate every milestone and every single inch in-between. Each will be a victory to be savored and you will let every friend and family member who sticks by you, every therapist and specialist who has helped you along the way, and the groups of friends you’ve met online know what your child did, and they will celebrate with you.

Sure, you will get overwhelmed with how far your child is behind their peers sometimes. You may leave playdates crying or stop going to them altogether, because seeing the gap is too painful. But your love for your child will keep you moving forward, one step in front of the other, and focusing not on what your child can or cannot do, but on your child’s heart, their personality, their passions, their giftings, their strengths.

You may feel guilty that you’re not doing enough, or that you should have seen the signs earlier, or that maybe you did something in pregnancy to cause this, but that’s just because you care so darn much about your child, you want the absolute best for them. But you will also learn that you are the absolute best for them, and that feeling guilty about it does no one any favors.

You may struggle in your faith, asking God why your child is this way, but you also wouldn’t trade your child in for a neurotypical child for anything, because they wouldn’t be your child, the child you fell in love with before they were born and have fallen more in love with as you’ve watched them grow and develop into people who work hard for each skill, who have perseverance and resilience built into them before their peers will ever need to learn them, who love unconditionally and wholeheartedly because that’s just who they are.

You’ll get annoyed when people tell you “God only gives special children to special parents” or that “they could never do what you’re doing,” because the fact of the matter is, you don’t feel special, nor do you feel like you have a choice in the matter. You are doing exactly what any good parent would be doing: loving and caring for your child. You realize that being a special needs parent means you have to step up and go above and beyond what other parents may do, but you are doing exactly what any other parent would do: caring for your child to the best of your ability, because that is just what a parent does.

Being a special needs parent is challenging, but it’s not something to fear. It’s a role full of hard things and tons of blessings too, just like any other role.

Oh, and look how cute our precious kiddos are, all playing together! All four of them are unique, all four of them offer different things to make our world a better place and I wouldn’t have it any other way.