Caring for a child with special needs


Foster care / Monday, January 26th, 2015

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 “special needs” child!

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.

21 Replies to “Caring for a child with special needs”

  1. I don’t know if I qualify. Is epilepsy “special needs”? It doesn’t seem like it. And here’s why: They might be special needs children–until you love them. Then they are just special, in the way that all those we love are.

    I am trying to trust that my daughter’s specialness will not hold her back from becoming the woman God wants her to be. God can use her as she is to glorify His name.

    For real advice, you’ll have to look elsewhere.

  2. No advice here, just blessings for doing what you know Jesus has called you to do. I’m pregnant with number 9 living (we’ve lost 3) and the question is always in the back of my mind if “this one” is the child that will introduce us to the world of therapies and special needs. I wonder if i would be strong enough and then i think, of course not! I don’t need to be because if God blesses us with a “special” child (and i totally agree with having some special needs myself!!!) it will be His strength i’ll be going on, not my own.

    God bless you and yours greatly!!! Darla

  3. Love this post! Our son is not special needs in the way that some children are, but he does have some issues that can really be a struggle to deal with. We do therapy with him, and it has taught me a great respect for those families that must meet the needs of their special children, in many more ways than we do. I like to think that God doesn’t give us more than we can handle, although some days it doesn’t seem that way 🙂 May your lives be blessed as you care for your special child!

  4. I agree with others, this is a beautiful post. My only experience with “special needs” children is my year spent at Faith Mission Home before I got married. From that, I know full well the amazing way those special children wiggle into the deepest corners of your heart! They don’t ask for much, but they give oh, so much, when we’re willing to look past the outward and love the heart inside! Blessings to you and your family.

    ~Bethany

  5. So many people don’t see beyond the face, the features, the drool, and the actions. They never stop to see the child’s heart. God bless you for giving your love to him.

  6. What a blessing for you and your family. I agree that we are all special needs… Years ago when I worked at Mt. View Nsg. Home, and we would go visit Faith Mission, I thought I could never work there. I thought I’ve changed over the years, and sure enough we had the privilege to visit FMH recently, and I came away wanting to bring all the dear people home with me!

  7. What a treasure to see you interaction with this young man as a blessing. We need more with your attitude.

    Thanks for opening up the curtain to give us a glimpse.
    Gina

  8. I only know about clocking in and clocking out in caring for ‘special needs’ adults. They taught me a lot about loving life! I’m cheering for you as you have a full time, around-the-clock experience!

  9. My daughter had many special needs and some of the most beautiful times in life were when I could see past her eyes into her soul as well! I have actually even seen grocery carts at about TWO locations for larger special needs children and swings at a few parks that are the same size. They even have straps to help support:) I could have cheered that manager and that town to high heavens:) your post is great!!!! You have a good grip on living life with these special kids. Keep recharging that battery. It’s one if the essentials to survival of the good life. I blogged quite abit about our daughter. She passed away a year ago but feel free to scroll through my blog. We got a special bed for her that I would recommend to anyone in search of one:) blessings to you!
    kikiraine.com

  10. I love the part about staring deep into his eyes. The thought that came to mind was what if he was thinking the same thing about you. “Does she know the blessing she is to me?”

  11. Jesus presence is so evident in your life by the way you love and care for this little guy! He’s pure delight to those who take the time to really see him!!!

    Blessings.

  12. I hardly ever leave comments, but this post grabbed me by the heartstrings! Yes, I love three beautiful, precious special needs little girls of mine, two of whom now live in heaven. They change us and teach us so many things if we let them. We are also getting ready to leap into foster care and I find myself a little jealous that you get to have an angel boy…I hope someday that will happen for us. The letting go is so incredibly hard but the joy moments are worth it. Blessings as you love him!

  13. I love this post, and LOVE that we were able to interact with Angel Boy. He’s such a sweetie, and he touched our hearts. To see him on the shoulder of my brothers and lap of my girl reading to him… he has touched us and given us compassion… Thank you for sharing your journey and your family with him and us.

  14. Thanks Shari for this post!!! I loved it so much!! I have a Down Syndrome son, so your angel holds a special place in my heart! And yes! I have plenty of my own ‘special needs’! I just love the way you put that!:) and no, I don’t have advice for you! Any for me? I think you hit a key when you say you look into his eyes. See the soul. Love deeply…..beautiful post!!!

  15. You can feel free to PM me any questions you have and if I don’t have answers, I might be able to hook you up with others who do. Have been in the special needs community with a variety of special needs in our family for 22 years now . . . and yes, the “more special” the needs I think the more passionate my Mom heart . . . and while I know a team approach would drive me crazy at times, there are other times I truly would long for that when dealing with some complicated things. I thankfully can draw from a few (very few) trust worthy sources at this point in my life to get good input for decisions etc. but the final one falls on the head of my husband and myself, and sometimes . . .that is really scary. We have decisions to make about more up-coming surgery and that is tough . . . I keep praying for God’s wisdom cause only HE knows exactly how much we should agree to this time.

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