Does Anyone See Me?

Jesus Understands

So, there we were—my mother, my sister, my three children, and I—walking through the airport to get to the gate for our flight home. There should be awards for mothers who travel with teenagers—the heaps of luggage . . .

See me
(Image from Unsplash)

The stops for sodas and snacks . . . the children deaf to anything other than electronics and texting! We had just been processed through security like cows being put into the squeeze.

The undressing, checking, rechecking, and dressing again is an athletic event for us all.

It’s more difficult with younger children than with teens and almost impossible with a special-needs child who is a teen. It can be hysterically funny watching people attempt this obstacle course—but not so much when it’s you!

Then suddenly, I heard my name being spoken and looked around to see a couple I had not seen in probably 12 years.

Jon, my son who has special needs, was a little kid back then, and this couple had been central to caring for my family during his hospital years.

It was one of those serendipitous moments, kind of. Ashley and Austin were mostly quiet because 98 percent of the conversation was about Jon. As we parted ways, I quietly studied my two older kids.

Living in a Glass House

Once we were in flight, I slipped back to their seats and explored each of their impressions of the meeting. At first they shrugged their shoulders kindly and looked out the window.

Then they took turns sharing what those early years were like for them; many moments were punctuated with deep silences.

I discovered that they had felt jealous of the time Jon was given, had been afraid that Jon was going to die, and had been embarrassed when friends came over and Jon was disruptive and cried incessantly.

They often felt forgotten and alone. They had to navigate through a mixture of ambiguous emotions at once, such as . . .

  • Resentment
  • Irritation
  • Concern
  • Worry

Very few times would people ask about Ashley’s artwork or her rabbit business (at age 12). Rarely was Austin recognized for his deep well of tenderness and gifted intuition.

Both of them felt invisible and on edge in the glass house called their home. We cried together that day; we remembered, reflected, and even found humor in some of the stories they told from their perspectives.

See me

(Image from Unsplash)

Their eyes welled with tears at times, releasing the hidden, pervasive heartache most siblings struggle with when they grow up with a special-needs child in the family.

Additionally, most parents of special-needs kids have many wishes that remain unfulfilled. They experience heartache often, long for freedom from the worry that’s like a shadow over their lives.

Often, they just don’t have the ability to meet all the emotional needs of their children. Therefore, many siblings need someone who will allow them to express their raw, unabashed emotions—so they might grieve for what has been lost over time.

In those times, I point my children to what Jesus experienced . . . often and deeply:

There was nothing beautiful about him or majestic about his appearance, nothing to attract us to him. He was despised and rejected–a man of sorrows, acquainted with deepest grief. We turned our backs on him and looked the other way. He was despised, and we did not care.  (Isaiah 53:2-3, NLT)

He knows. He feels. He understands.  That’s why He’s Savior . . .

Let Me Hear from You

If you know of a family raising a special-needs child, consider some of the following ideas for cultivating positive change in the lives of the siblings of the special-needs kid. I leave you with 5 helpful suggestions for engaging siblings of special-needs kids:

  1. Begin an e-mail conversation or ongoing outing with a sibling.
  2. Call and invite a sibling out for an event . . . movie, pizza, game night, workout, or trip to the mall.
  3. Attend an event with a sibling: sports or athletic event, art show or speech or play production, public or community service, or local hobby interest.
  4. Send a sibling something in the mail . . . a birthday or encouragement card, a letter just to say hi, or an invitation to a special event.
  5. Ask ONLY about the sibling’s interests, desires, or dreams. Cultivate a relationship separate from his or her brother or sister.

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6 thoughts on “Does Anyone See Me?

  1. I have a few aunts who have always made a point to do special things with each of the children in my family alone, so we had our own time with them. Selfish as it may sound, it was nice to have someone pay attention to just me for a little while; with a special needs brother, it was difficult for my parents to give the rest of the siblings undivided attention. Going out for just a few hours can be a nice and much-needed break for the sibling of a special needs kid.

  2. Melanie, you do not sound selfish in the slightest. Your choice to spend time away is one of the healthiest choices you could make. And, the siblings will forever be grateful for the effort you put into their lives. Keep up the great work. Colleen

  3. I love this blog. I guess I didn’t realize there was a whole menu to choose from. I linked it one day from your Dads Day by Day. I am excited to find this. With my other 2 children I just ask them. I did exactly like you, I was so worried about my daughters needs and how things would never be ok again.I just thought the other two will have to cope. Kids are reslient though!!!! I just ask them now it the quiet moments I have with them, what would make you feel like I love you the most? they are so honest, there is a lesson there for us adults. When your time is limited you need to make the most of it and they help me do that. They are teens and tweens. Or as my 11 year old says I am practically a grown woman now, mom. LOL

  4. My dear Larlene, I just found your comment today…all the way in September. Yet, I know there is a reason for that. Perhaps you are facing struggles or speaking with your kids and the acknowledgement of their lives/feelings may be of hurt to you. For whatever the reason, I find you are so very rare as a parent; courageous, facing the realities of life with hope and love. May you be blessed this very moment-encouraged that someone here believes in you!! Colleen

  5. Colleen, about the time we began seeing our situation as a gift for growth in Christ (instead of some tragedy) my son was just emerging from being a toddler to being a little kid. We began talking in terms of the good thing God was doing in our family, the blessing of learning how to love one another so unconditionally, etc. We talked to him all the time about how strong he would grow to be, how patient, how secure. He wore our family situation like a medal of honor!

    He was quick to share about his sister and what was going on in our family with teachers, parents of friends, etc. and was always commended and affirmed by the positive responses he received. Because of this, he has never viewed his childhood with a sense of loss or neglect. He sees it as having been a special training ground for becoming the amazing young man he is today. Lessons learned in those early years have produced much fruit in his life – especially through high school, college and now work.

    From an early age, he has learned that life is not about him, rather it’s about the good thing God is doing in and through His people. He knows he has a choice on how to view things – as a victim or victor. There will always be difficulties in life, challenging relationships, personality clashes, etc. The victory does not come in “getting away” from those situations (making them seem all the more negative), but in learning how to find the peace, the opportunity for growth, and the gift in being in those situations.

    • Mary,
      What wonderful timing! Since I wrote that piece, my kids are older now. I have observed the same things…my “typical” kids know so much more about the realities of this life…there is suffering, it’s not about them, they are very resilient, pity parties are never attended by anyone but them, they are aware of how many gifts they have in being ‘typical’ and don’t take that for granted. In fact, my son is now working on his university campus in support of Autism, he’s written many papers and blogs on how to care for others who are different, and has a view of life that is rare for one his age. So I’m right with you…because they have been through many hardships-not connected to disabilities-they know there is a choice in every moment…to move forward or be stuck. It’s taken much time but the investment of time and talking through things is paying off in their lives. I love that you have done the hard work…the affirmations, discussions, and now are seeing the growth of seeds planted long ago. I know this isn’t the case for all families….it would be great to hear specifics that have helped produce character in your kids. Many people read the blog and would find your ideas so helpful. Thank you so much for your wonderful words and all the effort you have made to honor our Father in heaven with the children He’s put in your life. May you be very blessed! Colleen