They’re Special Too

Yesterday’s Speaking of Normal spotlights a reality of having a child with special needs that’s often overlooked – siblings.  We’ve got three other boys in the house, and I can’t tell you how many times I’ve hurt for them, especially Jackson.

Jack’s the second in birth order, but he carries the responsibilities of the oldest. A wise woman pointed out, back when Jack was still a toddler, he displayed tendencies of first-born and second-born children. Like the boy from in the quote, Jack is often charged with caring for his older brother. Andrew is just beginning to share the responsibility, but it’s all Jack’s ever known.

I’ve talked to him about it multiple times, and I pray specifically for this issue regularly. I’m often torn because I love that the boys are developing a greater sense of compassion, but on the other hand, I don’t want them to become bitter. A couple of years ago we went to the “Jam with Ham” (the annual kickoff for Seminole hoops) and we sat right on the floor. Almost every player came over and gave Caedmon a high-five, a couple gave him T-shirts, but not a single player noticed his three brothers standing by his side. Don’t get me wrong, I’m thankful those guys reached out to Caedmon, and many of them have been out to help with Miracle Sports – Jack even became friends with Bernard James. I’m not faulting them in any way, but it’s a great illustration of what being the other one feels like.

Less important.

In a weird form of irony, kids like Jack share a lot in common with the siblings of superstars. They all know the coldness of living in a shadow.

Jackson, literally in Caedmon's shadow. I couldn't help myself.

But having a superstar sibling is, in my opinion, easier to navigate. They could ride coat tails, they could be jealous or resentful, or they could feel proud for their siblings accomplishments, but each of those reactions could be understood by the common man.

What if your jealous that your brother gets to go to physical therapy?
What if your resentful that your brother’s in a wheelchair and gets all the attention?
How in the world do you feel appropriately proud?

We might tell LeBron’s brother, “I totally understand. I would feel the same way, but at least you get Heat tickets.”

What would we say to Jack? I’m afraid it would sound more like, “Grow up. Stop being so selfish. Don’t you know he’s got special needs?”

Easy for us to say.

These kids could be struggling with some pretty tormenting thoughts. Almost all of them love their extraordinary siblings more than life itself, and they desperately want them to be happy, but at the same time the “whys” and “what ifs” haunt their minds, racking them with guilt, self loathing, resentment, or who knows what. They need us to love them, in extraordinary ways.

Try to understand. Can I encourage you to get a copy of the book, Being the Other One, by Kate Strohm? It’s a collection of essays, written by people who grew up as “the other one.” The one that always comes to mind was about a guy who purposefully failed athletically because he felt guilty succeeding where his brother could not. I never would have anticipated a reaction like that, but I’ve got my eyes open now. Like G.I. Joe used to say, “knowing is half the battle.”

Open the lines of communication. Encourage the kids to talk about their experiences. You’ve got to be careful not to plant unnecessary seeds, but you need to ask probing questions too. If you notice an overlooked moment, talk to them about it. If there’s a day where the kiddo carries a particularly heavy load, check on their heart. We cannot let momentary troubles fester into lifelong scars.

Give them one on one time. Extraordinary children get inordinate amounts of one on one time with parents. We sometimes don’t think of it that way because it’s trips to the therapist or appointments with specialists, but in the eyes of our little ones it’s alone time with mommy or daddy. We must make this a high priority so our kids never misunderstand medical necessity for preference.

Celebrate their moments. Because reaching benchmarks is so difficult, we often make a big deal about our extraordinary children’s successes. All the while, brother or sister is waving the picture they drew in the air, desperate for a celebration of their own. Again, it’s easy to overlook these moments because “other ones” achieve success easier, but in their eyes it’s all the same. They want us to tell them we’re proud of them, just like we are of their sibling.

Pray like crazy. This is a battle of the heart and mind. We can hug, support, celebrate, and focus with passion and consistency, yet still a wayward idea could take root. We won’t see every moment, and they won’t tell us every thought, so we must pray regularly for them.

Just like being an extraordinary child, being “the other one” isn’t easy, and they didn’t sign up for it. It’s part of their normal, but we must be mindful of their unique needs and struggles. Those little ones will show you feats of love and inclusion well beyond their years, but we cannot take for granted the load they carry. Remember, they’re special too.

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25 comments

  1. Thank you for the beautiful post. I have a lot of the same thoughts and feelings about Michael and Matthew’s 2 brothers and sister. What I think is wonderful about it all is that their siblings will know and live a compassion that not many people are afforded. In turn, they will be more compassionate and understanding people and know truely what it means to serve. On a lighter note, Michael and Matthew’s little brother Christopher, who is 2, loves to play in Matthew’s walker and walks around the house in it while Michael is in his walker. It really is precious! Thank you again for your insights!

    1. Our kids love playing in Caedmon’s gear too. Jack will fly in the walker, when he has the space. Toby and Jack enjoy the wheelchair, Jack drives, Toby just sits. We’ve even had them put on his AFOs and tap around the house. The best is when we’ve been waling a long time and they get tired. Case in point, this is in Caedmon’s wheel chair…

  2. These little guys are ALL lucky to have you as a dad. I know you didn’t write this to get praise for yourself, but I just had to say it. Beautiful kids.

  3. Thank you so much for this post. We struggle with this on a daily basis. I sometimes find myself relying on Sadie for so much more than any four year old should have to do. You expressed in words so many things that I have thought about myself. I often times feel so conflicted when Sadie will say to us, “When I get Cerebral Palsy I can go to therapy”. I often times find myself wanting to say something to her that may not sound very nice but I stop myself. In my mind I don’t know why she would want to deal with the daily obstacles that Sam faces, but then I remember that I think Sadie only sees Sam for what his abilities are, not his disabilities. All I can really say is Thank you for reminding me to celebrate Sadie for everything she is!

    1. “When I get Cerebral Palsy I can go to therapy” Just, wow. That’s exactly what I’m talking about. I would never expect a child to reason that way, yet there it is. You and Brian are FANTASTIC parents!! Those kids know they are loved, know they are well taken care of, and know you would do anything for them.

      By the way, it’s partly Progressive Pediatrics fault. If they would just have less fun, removed the colorful stuff, take out the play set, and be grumpier our kids wouldn’t want to go there all the time. My kids equate it with the Chick-fil-a playground!

      Okay, back to the land of serious, Just keep loving on those kiddos. We’re all growing and learning as we go. It’s high time you guys came over for dinner!

      Thanks for reading.

      1. Yes we do need to get together soon. I saw Jeni (and the new baby :)) last night. I miss you guys. I hope things settle down soon so that we can start attending Miracle League regularly again. Thanks for all you do… Your writing is so inspirational to me!

  4. Ryan, this is a lovely tribute to your other children and to the thoughtfulness you and Jeni always show them. But, I have another “essay” to add. As the sibling of a Downs Syndrome child I have to say the best thing my parents ever did was to treat my brother as “normal”. In other words, there was no deference because he was “different”. When he did something right he was praised and when he did something wrong he was punished. I once was on a sibling panel for parents of children with differing abilities. The one realization I had as a result was that having someone different in our family was “normal” for our family. It was just the way it was and had always been. Being the mother of a child with special needs was enlightening in this regard too. I remember talking to Eliza about the difficulties of being blue, taking so much medication day in and day out, riding in a “stroller” in her teens and having to leave class to have a procedure to slow her hummingbird heart in a merciless peer-centric middle school. She shrugged it all off and told me that that was what was normal for her because that is how it had been her entire life. Jackson is a brilliant, creative and awesome child and somehow what is “normal” in his life will make him into the awesome man he is to become. Even the humbling moments of being left out of a high five have led his parents to devote special time and tributes (such as this blog entry) to him. He will be the sum of all these wondrous parts.

    1. I just might be using some of our comments on an upcoming “Speaking of Normal” post. Thanks for sharing, and thanks for your kind words. Eliza was wise beyond her years, and we’re glad to know all about her from you. We still play her Peter Pan snow globe to help the boys sleep 🙂

  5. Great insight! In a nutshell…(pressed for time here)
    I stand in awe when I get a glimpse of the maturity that my Nicholas shows in the sympathy department….Some people that are in their 80’s haven’t obtained this yet……Miranda has taught even the baby how to love in a way that is too deep for words.
    Our “special needs” kids teach us more than we teach or do for them, how to be selfless, how to wait, and so much more….. May God grant our families the ability to see the blessings of real living that these kids give us.
    In His mercy, Stephanie

    1. Thanks for the nutshell 🙂 It’s so true, that “other ones” have a completely different understanding of love and compassion due to their “normal.” God bless them.

  6. Wonderfully stated Ryan. This is why Miracle League is so valuable, it allows the whole family to interact together in a normalizing and fun activity, I think Luke may even enjoy it more than Cam. I completely agree with the one on one time being so valuable which is why I actually look forward to getting up with Luke at 5:45am on the weekends and going out for breakfast and to the park. Just don’t tell Becky I look forward to getting up so early.

    1. That’s some early breakfast!

      That’s one of the reasons we love Miracle too, everyone together. Thanks for reading, and thanks for commenting!

  7. Wow, your family is so blessed to have you. So many times, people overlook the siblings. My youngest struggles with the same things carry for her older sister. As they are entering the teen years and the “gap” is bigger, we enter this stage again.

      1. I’m expecting the challenges to become more intense, and the conversations deeper. I’ll be depending on all those moms and dads who’ve walked the road before me to offer encouragement and support. hint hint hint

  8. Ryan: Great insights and suggestions. Prayer is so important too because that is where God gives us the insight and creativity to meet the individual needs all our children have. It’s so crucial to spend that time alone and have conversations… to be a student of your child and to understand where they are coming from. So many times, as I’ve entered into good conversations, I’ve realized my child had a totally different understanding of something than I thought they had.

    As far as wanting to go to therapy too…it’s not just siblings. When I go into classes to get students, I always have students asking me when they can start going with me. 🙂

    Miss you all! Love to see all the pictures.

    1. Great to hear from you! If a husband and wife can experience the same situation and come to two different, sometimes radically different, conclusions, it stands to reason that our kids would do just as your said. It makes talking to them all the more important. Thanks for contributing.

  9. Ryan
    Awesome insight. Thanks for sharing your’s and your families lives with all of us. Keep up the great parenting. We are honored to be family
    Dawn Howard and Timothy Chung

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