Caring for a child with special needs

Confession: I don’t usually write about my extra children until they leave us, but little Angel Boy is an ongoing part of our lives for now. I feel deep respect for both him and his family, and will not share photos or case-sensitive information concerning him. The things I write in this post have been approved by a voice I value.

What a joy it’s been to care for a child with “special needs.”

Until I had one, I didn’t understand why mothers bridled at the word “handicapped.” Not many years before that it was “retarded,” which now sounds like an unthinkably cruel insult but at the time simply meant “delayed.” Well, now I bridle at all the wrong words too. I get it. Though I think “special needs” is kind of funny, actually—I can’t help wondering What child does not have special needs?

(I have a few special needs of my own.)

Well, he has been a joy.

I’ll never forget the first time I looked deeply into his eyes and knew I was connecting to the real person inside. I was sitting in church singing “Be Still My Soul” with him astride my lap, facing me. Suddenly his cloudy blue eyes had wandered up to mine, were gazing straight into mine, and I was singing a promise: “Be still, my soul! When change and tears are past, all safe and blessed we shall meet at last.” He got it, I know; and all of a sudden I did too.

Our journey with our first three kids prepared us to love this one. I’d already had to face a few key truths and make them my own.

1. Motherhood is not easy street.
2. People will not always understand.
3. My children don’t have to make me look good.
4. Being the creators of a PUBLIC SCENE is not, in fact, the end of the world as we know it. We’ll live.

But there are more, with little Angel Boy, and I have to learn fresh. I just didn’t know.

1. His simple needs are so refreshing: no complexities, no drama. Just bottles, diapers, and cuddles—lots of them.
2. My eyes have opened to an entire wild underworld of special needs. Seen through the lens of my son’s interests, the world seems full of absurd omissions: Are there really no in-store diaper sizes between 6 and Depends? And WHY can’t they make these shopping cart child-seats bigger? What do other mothers do?
3. He has grown compassion and adaptability in our other three children. How good it has been for them to live with a child who breaks the norm! “But Mommy, I don’t want people to stare at him!” “Nobody will stare, sweetie. And even if they do, why should you care?” “Because I love him…”
4. I can swallow my pride and gratefully accept public assistance for expensive formula I can’t afford.
5. I have to recharge. The burnout caught me off-guard: that six days out of seven, he’s a piece of cake, and suddenly on the seventh I can’t take it anymore—the drool, the vocalizations, the intensity. I need to get some space, take a break, come in clean—and unexpectedly, it is okay again.
6. We have met so much kindness from others. Cautious questions to us, gentle responses to him, easy affection, affirmation where we least expect it. Two nights ago I heard a five-year-old friend say to my daughter, “Is that your baby?” [He’s almost as big as they are.] “Him? Yep. He’s like a baby in a big boy body.” “Aw. He’s sooo cute. He has those chubby little cheeks…”
7. Being a team player is awesome. I won’t kid you: this is one thing parents “in the system” have going for them that conventional parents often don’t, or have to fight for—a team approach. We work hand in hand with the birth parents, the counselor, the school staff, the caseworker, the designated nurse, the resource agency, and the legal guardian, among others. It’s incredibly frustrating if a simple decision has to be made and I realize I’m not authorized to act, but it’s a lifesaver on the big issues like What is best for him now? What’s a reasonable goal to work toward? How concerned should I be about this behavior? A lot of people are working together on this. We’re not alone.
8. The “limitations” of a child with special needs can be his most endearing features. He accepts others completely, trustingly. He’s darling and loveable and innocent. He will never walk away from God or hurt another person or choose to do wrong.

In short, it’s been a most blessed path—full of the human and the divine, the joyful and the crushing and the redeemed. And we haven’t walked to the end yet.

*****

I’m sorry I won’t be able to answer any questions about him and his time with us. Please understand—

But what about you? Do you love a child with “special needs”? I’d sure welcome your advice.