Loving a Special Needs Family Member

Although our twins are nineteen months of age, we can’t help but sometimes feel as if Eleanor operates very much as an only child. While Eleanor is a healthy, energetic, and spunky toddler, Andrew is blind, developmentally a newborn, and has an intensive therapy schedule; all of which makes for a difficult play partner. But to our delight, in recent days, Eleanor has been making the best of the situation in the following ways: we’ll find her snuggled up next to Andrew on the floor, she loves pulling off his socks, and kisses him tons. She presses his belly button (or what’s left of it, long story) and says “beep,” and loves to rock his chair. When he cries, she yells, “NO!” and “WHY?” and sometimes grabs his hand and pulls it to her cheek. Eleanor carefully watches what Andrew’s therapists do with him and when they leave, she takes his therapy toys and gadgets and mimics what they do.  All in all, she is a fine twin sister and it is in these moments that we can sometimes forget the grief that can come with the two not being able to play together in the way that most siblings do. Here is a video of the two. Please excuse the mess! “Bbo-bbo” means “kiss” in Korean:

Eleanor loves Andrew because we, as parents, love Andrew. Generally speaking, when it comes to interacting with a special needs sibling, children take queues from their parents. We’ve noticed this outside of the family as well: if a parent acknowledges that Andrew is there and models warm and loving interactions with him, the child tends to follow suit. This is awesome when it happens. With our own family, we hope that Eleanor continues to watch us model our deep love for Andrew and that her experience as Andrew’s twin sister will help mold her into a more kind, loving and understanding individual.

Recently, our family had the privilege of meeting another family who has been on this walk much longer than we have–27 years! Like us, they also had preemie twins and one twin became severely disabled after a devastating infection that occurred while in the NICU. The lengths this family has gone to incorporate their severely disabled adult daughter into daily family life is inspirational, and the mother shared how having a special needs sister had shaped each of their three other children in a positive way.  We even got to meet one and she seemed pretty awesome!  Below are just a couple of the many photos we took of home adaptations made to accommodate their daughter’s needs. Not included are photos of a two-car garage that was converted into a lovely first floor suite,  too. Having never met another family with a child similar to Andrew, it was a treat to meet and talk with somebody who has been there, is still there, and has lived to share her experiences–the good and the bad–with sincerity and a smile.

Custom-designed, the most beautiful wheelchair ramp ever!

Like Andrew, their daughter LOVES swimming. So they built an accessible pool in their backyard. Note the chair lift in the back.

Another lovely ramp that leads from the deck to the pool area.

And this is just the outside!

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8 Responses to Loving a Special Needs Family Member

  1. Kim M says:

    This was such a touching post! They are so cute together.

  2. erin says:

    yes, it is clear you adore both of your children, and they see that and model it as well. i love you and your family so so much. thank you for the updates ❤

  3. Louise says:

    Your children are LOVELY and it is wonderful to see them interact together. I look forward to hearing more about them!

  4. Leigh says:

    I really appreciate your blog. I foster an infant with a genetic condition who has many of the same issues as your Andrew. You are blessed to live in new york with such comprehensive services. It is great to see your diagnostic assessments spelled out for those of us who have to fight for every intervention. It gives me a direction to push in!
    Thank you and I wish you all the best

    • earlybirdies says:

      Hi, Leigh: Thanks for the kind words. I’m glad our blog can be helpful to another family. And the infant you have right now sounds so fortunate to have you. I agree, we are really blessed to live in New York. My husband and I are not originally from here and we’ve often contemplated leaving. But now that we are aware that services in NY for the special needs population FAR surpasses that of any other state, we are pretty much never leaving! Keep fighting the fight.

  5. Esther Huh says:

    Eleanor is so cute! She has grown a lot. Did she say wake up to andrew? So cute. And i like that u taught her the word bbo bbo. So adorable. It so exciting to see that Eleanor loves to interact with Andrew. She is being such a good sister. You n your husband are doing good job!! Fighting! 🙂

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