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Manic Monday: Reaching out to children With Special Needs

Due to this post from Roni Loren (thank you for the warning, Roni) I’ve decided to remove most photos. 

Special needs children are near to my heart. Some of you already know it took us five years to get Grace, and that’s because I have a genetic issue (a Robertsonian Translocation) that increases my chances of having a Downs Syndrome Baby by 12-15%. Doctors believed this was the reason for my 2004 miscarriage and for the difficulty in getting pregnant. When we finally conceived Grace, I was grateful and terrified at the same time. It takes a strong person to raise a special needs child, and I wasn’t sure I had it in me. We had an early screening test that eased our fears, but I spent nine months praying for a healthy baby and promising God that if he gave me that miracle, I wouldn’t press my luck for a second child. Corny, but that’s a big part of the reason I’m against having another.

Grace summer 2011

Grace is a highly intelligent, observant kid who never fails to ask questions at the worst possible time. Her first experience with a special needs person came this past summer. We were grocery shopping, and all of a sudden we could hear someone incoherently shouting in an adjacent aisle. I could tell right away it was a special needs person, and we soon rounded the corner to see a young woman – possibly a teenager – in a wheelchair with various tubes attached. Her affliction seemed to be causing her to shout uncontrollably, and her caretakers had no choice but to shop and let her be.

Naturally, Grace pointed and asked why the lady was shouting, and why she looked so different. One of the caretakers gave me the evil eye and waited to hear my response. My skin actually felt clammy. I didn’t want to offend anyone, and I didn’t want to tell my daughter something negative that she could repeat. But how do you explain something so serious to a five-year-old?

I decided to be as honest as possible.

“Some people have medical problems that make them act differently,” I said. “They need extra love and care.”

My empathetic child studied the girl (who was still shouting and looking completely stressed, poor thing) for a moment, before finally stepping up to her and saying, “it’s okay. I need lots of love, too.”

The caregiver smiled at me, the girl calmed (if only for a moment), and I told Grace how proud I was of her. As we walked away, more questions ensued: why was the girl like that, what caused it, will she get better?

I’m all for protecting our children, but there’s no point in insulating them from the very real issues out there. So I told her in simple terms that sometimes when babies are growing inside their moms, things just go wrong. No one knows the reason why, but doctors do all they can to make things better. Sometimes medicine does the trick, but other times they still need extra help.

She seemed to accept this, and true to form, didn’t forget it. The first month of school, I watched as a special education teacher guided a Downs Syndrome child out of the school. Like most, he appeared happy, but I could tell he had some other issues plaguing him. Some kids stared and gave him a wide berth, but out of nowhere comes Grace. She runs up to him and waves, then tells him she’ll see him tomorrow. He smiled back, and so did the teacher.

“That’s Devon,” Grace informed me. “He’s in our class, but he’s got a special teacher, too.”

And that was all she said. She understood the concept, but didn’t feel the need to single Devon out anymore. I was so proud of her, and so grateful that something I’d said clicked.

When I was a kid, special needs children were whispered about, sometimes teased, and a thing to be feared. Thankfully, things are changing. More and more educators are being taught how to work with special kids, and every generation has increased understanding for those who appear different.

Grace’s empathy only proves that bigotry in all its forms is something taught and reinforced to children by the adults surrounding them. In this world full of turmoil, being honest with our kids and teaching them tolerance of all others is more important than ever.

How do you handle situations like these? If you’re a parent of a special needs child, what advice to you have for other parents?

25 comments on… “Manic Monday: Reaching out to children With Special Needs”

  1. Great post, Stacy. Luckily, my daughter doesn’t seem to notice skin color or special needs. She doesn’t discriminate, and like you said, it’s mostly because I don’t.

    • Thank you! Skin color is one Grace hasn’t noticed either, and it surprises me since it’s predominantly white around here. One time she pointed out that she wanted a hair bow like the “girl with the brown skin,” but she didn’t ask why her skin was a different color or anything. It just was, and it wasn’t a big deal.

  2. I am so impressed by the tactful and intelligent way you handled that situation. I think when moms and dads tell their kids, “Ssssh, we don’t talk about that,” it can reinforce the message that different = bad/shameful. Kids can see that there are others who don’t walk/talk/behave as they do, and it is natural for them to wonder why and be curious about it.

    Your daughter is beautiful on the outside, but more, she seems to be beautiful on the inside, too. (Wonder where she gets that… not!)

    • Thank you, Beverly. I guess I’m a little sensitive because of our heightened risk. I also have a cousin with Down’s, and I remember hearing stories about how he was treated.

      Absolutely. And those moms and dads are well meaning, not wanting to draw attention or make anyone uncomfortable, but it’s negative reinforcement.

      Thank you so much, lol. She has amazing empathy and compassion. Levels out her devilish streak…most of the time:)

  3. As the mother of a girl with special needs – who looks “normal” until she begins acting out – I wish more people would just ask questions rather than decide she’s badly behaved. Or at least I did…she is improving rapidly as an adult and I now feel we can go places more easily.

    But I take issue with your remark about Down Syndrome. Yes, looking after a child with special needs is tough, but people with DS are a blessing. If we “normies” (that’s the name my daughter’s best friend has for us!) could be more like them, the world would be a kinder place. I would encourage you and your daughter to volunteer for Special Olympics and see why your fears are unfounded.

    • I didn’t mean to offend you. I have a cousin with Downs Syndrome, and he’s a wonderful, sweet person. I should have been more clear: it’s a lifelong commitment, and my fear was that she would have a more severe case than what I’d been exposed to. What if I couldn’t care for her? When my cousin was little, he had several surgeries and other medical issues, and my fears stemmed more from that than having a Downs Child. Does that make sense? Again, I apologize for the offense.

  4. I am a parent of a special needs child, who is also a twin. They were born at 24 weeks and both had significant delays. My daughter “caught up” by kindergarten, but my son has a short-term memory deficit and some ADD issues. He’s an interesting guy, because he is cognitively very bright, but his organizational skills and memory issues persist. Two things I’d like to share:

    I tell him, and his siblings, that we all have strengths and weaknesses. Some are visible, others are not so easily seen or identified. The key is to learn to use our strengths to overcome or compensate for our weaknesses. It’s something that all successful people do all the time.

    The thing I have struggled with most (with all my children) is recognizing the difference between facilitating and enabling. This line in the sand is constantly shifting and often moves before I realize it. When my twins were in third grade, my daughter complained that I always helped her brother with his homework and that I never helped her. I explained that homework was designed to be done independently, but that her brother needed someone to sit by him or he would forget what he was doing. Then I asked if she needed help with her homework. She thought for a minute, then said no. I promised that if she ever really did need help, all she had to do was ask. It was the last time she ever had this kind of issue.

    • 24 weeks, oh my goodness. That must have been terrifying. For them both to survive is nothing short of a miracle.

      What wonderful points regarding strengths and weaknesses, and that’s a great way to explain the differences to your children. And figuring out the difference between facilitating and enabling would be extremely tough. Kudos to you for being able to make your daughter understand that you weren’t giving your son more attention “just because,” and that they were both equal in your eyes. That would be the hardest part for me.

      Thank you for sharing!

  5. What a beautiful story. And I couldn’t agree more with the way you handled the situation to encourage your daugther to be open, accepting and loving. I can only imagine the pride that swelled in your heart. What an extraordinary gift…it brought tears to my eyes.
    We should all embrace Grace’s empathy and openness! When I come into contact with children or adult’s with special needs, I try to see past any physicaly or mental affliction and simply see them for the person they are and treat them how I’d want to be treated…with respect and kindness!

    • Thank you, I really appreciate it. Yes, I was very proud of her. She has her moments:)

      Yes, we should. It amazes me when I see people teaching their children intolerance of anyone different from them. Life is too short and there are too many other things to worry about.

      Thanks for commenting!

  6. You sure raised her right. And you know, kids like Grace willing to step up and interact with a special needs person and not be afraid are wonderful role models. Others will see this and change their attitude. That’s an incredible gift. 🙂

    • Thank you. I can’t take all the credit – some of its just natural with her. We’re very lucky. I hope she does help other kids to be more empathetic of Devon and other special needs kids her classmates may be exposed to.

  7. Beautifully post, Stacy. I think everyone wonders if they have what it takes to care for a child with special needs. I know I wondered until I took the job of helping babysit a three year old with cerebral palsy. Everyday brings new challenges for him. Because he is three, small for his age and can’t walk, kids tend to stare when we go to the park. A lot of questions arise. That being said, I am impressed with how accepting children are (sometimes more so than adults) and how they want to help make his life easier. It is a joy to be around this little guy and I’m thankful to have the chance.

    • Thank you, Annie. Kudos to you for taking on the task of babysitting a special need to child. I’m not sure I’d have the courage to do that, especially one prone to medical issues and such.

      And I think children are naturally more accepting than adults. It’s only when the adults influence them that their vision becomes blurred.

      Thanks for sharing your story!

  8. I approach this much the same way you do – explaining physiology when I can, helping my kids understand what those “special needs” are, and encouraging them to look past whatever “disability” the child has. Most of the time, kids just want to understand and are very accepting of others, especially when we model that attitude for them.

    • Good for you, Julie. It’s really hard to do that (at least for me), because I don’t explain things verbally as well as I do with writing, lol. And that’s true, most kids DO just want to understand, and it’s all about how/what you tell them.


  9. Beautiful post!. When I was pregnant with #4, an ultrasound showed Downs markers but we opted not to do an amniocentesis. If it was meant to be it would be. Thankfully we had no problems. My kids are surrounded by special needs people from their immediate cousin, as well as some extended family cousins, to their Godmother. And your Grace has it right, we all need lots of love 🙂

    • Thank you. I was worried about the amnio or cvs, too. Our initial screening showed no markers, so we opted against it. Glad you guys were fortunate, but it’s nice your kids are exposed to those with special needs and know to appreciate them.


  10. Grace is so pretty and smart and kind and sweet. I love the way she interprets situations (through your explanations) and how she handles them with … grace and love. =) I’ve heard this somewhere: that kids with special needs are truly special kids the world needs, too.

  11. I was touched by this post. Like you, I don’t know that I’d have what it takes to parent a special needs child. I deeply admire those who do it with grace.

    I think you named Grace the right thing. She seems to have quite a bit of inborn social grace. It will serve her well as life goes on. You’re doing a good job parenting her.

    Sorry I’ve been so quiet this week. Today is the best day I’ve had, but I’m still barking these horrible coughs that sound like hell cats. LOL

    • Thanks, Catie. I feel the same.

      And thanks for your comments about Grace. I hope she’s able to keep her kind attitude as she gets older and is exposed to more things. And thank you – I always worry I’m making mistakes.

      Hope you feel better soon. I know you’ve had it rough!

  12. Stacy, when I read Grace’s response, it made me cry. You really are doing a great job with her for her to respond in such a loving manner.

    I worked with a group in high school called Best Buddies, where we paired up with a special needs student. We would go do activities outside of school with them – take them to a school game, out to eat, bowling…normal activities for a regular student, but something special for them. It gave me a strong appreciation for what people with various difficulties go through.

    As a mom, I can only imagine what you went through wondering if you were strong enough if things turned out differently. And I understand the reluctance to have a second child. As a matter of fact, I’ve told my hubs that if we chose to have a second, it will be before I turn 35 – as the risk of Downs increases exponentially after the age. It it happened, I know we would love the child to death and make it work, but it is an amazing undertaking for anyone who does it.

    • Oh, I’m sorry. Thank you so much. I always wonder if I am really doing the right things. It’s so easy to mess your children up with the wrong words.

      Best Buddies sounds like a great program. I’ve heard of similar ones, and I think it’s awesome. To hear about teenagers going the extra mile when they live in such a materialistic world of distractions is heartwarming.

      And thanks for your understanding. Yes, I will be 35 in April, and my risk increases even more because of the genetics. If we were going to have a second, we should have done it quickly, but it just wasn’t right for us.

      Thanks again for your kind words!

  13. Pingback: The latest (and greatest) around the blogosphere… – Natalie Hartford

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