Gillian Marchenko

March Home Staging, Jooniper Design, Author & Speaker

She’s enough: Parenting a child with “low functioning” Down syndrome

Parenting a child with low functioning Down syndrome is tough.

I have two children with Down syndrome, and they are very different. Just six months apart in age, Polly (who is six) is counting, she knows her ABCs, talks a mile a minute, and is learning to read. Evangeline (adopted from Ukraine in 2009) is non-verbal. She signs more, bye, and sing. To many, she would be considered low functioning.

I hate to put kids in a box. I stay away from terms like “low functioning,” but sometimes in the quiet of the night, I find my heart thump louder and my eyes fill up, because Evangeline is not communicating with the world. She doesn’t interact with those around her. And it hurts.

This post is about Evangeline.

As her mom, I want more for her. I want her to enjoy people and places, and to learn and grow and develop.

But also, if I’m honest,  I want more for me, and for my husband, and for Evangeline’s sisters. I want to know what she is thinking. I want her to look me in the eye and call me mama.

Sometimes it is difficult for parents in the special needs community when they don’t see their children doing the same things as other kids they know.

I live in that dichotomy every day with two children with Down syndrome under the same roof.

This morning, Evangeline came into my room while I was asleep and crawled up on the bed.

I love that she comes to me. When we first brought her home from Ukraine and a long time afterward, she wanted nothing to do with me. Now, she not only tolerates me. She seems to like me.

With a little prodding, I convinced her to crawl up next to me. She cuddled under the blankets, and although she didn’t want to hug me, she was with me.

I studied her beautiful crystal blue eyes. Her heart-shaped face. Her smooth golden hair. Her full ruby lips.

We’ve had her home for three years, and she is growing and developing. She puts blocks in a bucket, plays with toys, looks us in the eye, and leads us by the hand to show us what she wants. If Evangeline took a test today, she would probably score around a 9 to 12 month level in most areas although she is five years old. And I’m not going to pretend that doesn’t hurt, and that I don’t worry about her future, and my future caring for her.

But this morning, lying together in my bed for a few quiet moments, I sang “Jesus loves me,” she smiled at me fleetingly, scanned the room, then flicked her eyes back to meet mine.

This morning, she was enough.

My job is to help Evangeline meet her God-given potential. But I am not the judge of potential. What if this is her potential? To smile, and laugh, and feel safe and secure with us?

Of course, it’s hard to say. And I will continue to pray and seek out therapy and help in an effort to hear Evangeline’s thoughts spoken to me one day.

But this morning, thankfully, because I needed it, God reminded me.

She’s enough.

Check out my friend Christie’s post Functioning to hear more on the subject. And if you are a blogger and have written about what functionality means to you, leave your link in the comments :).

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39 comments found

  2. Hailey has just in the past few months started doing the same thing. I love those few tender moments in the morning. I don’t get the pleasure of hearing her say “I love you” but those moments let me feel it. My heart aches for her to talk to me. I don’t know if she ever will. I have to take every little gesture she gives me.

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  5. I loved this blog…my son is 14…with the dual diagnosis of Down syndrome and Autism..and he would also be considered “lower functioning”. He is also non -verbal. Not all children are “high-functioning” with DS..and that seems to be the only children who are profiled. I could not love my guy any more..but you are right …there are two sides to DS..each child is so different.just like under the Autism spectrum…

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    1. Great way to put it, that some kids don’t seem to be profiled to the world. Each child is different, and all parents should be able to share the highs and lows of our parenting journeys. Thanks for you comment :).

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  6. Gillian,

    Thank you so much for developing your blog and sharing your thoughts with the world. I am a mom of a Down syndrome little girl. The road is certainly not easy, but will never be boring. It has helped my family redefine our priorities….again. I agree with your sentiment that she is ENOUGH. My other child, a boy age 6 has Apraxia, so as a mom with 2 kids with “special needs” I will never more need to compare their development with others. I can only compare them with themselves. It is a bit of a relief, actually. And though their futures are uncertain, so are all the kids…who knows but the Lord above!

    Keep up your wonderful work. I look forward to reading more.

    Love and kinship,

    Lsa Stammerjohann

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  7. Hi Gillian,
    Thank you for this post. Our sweet, Julia, sounds very similar to your Evangeline. We brought Julia home from Ukraine in 2010. She has blossomed in many ways, but there are some things that she is unable to do at this point and it breaks my heart for her. We are so grateful that she is part of our family. Julia brings such joy to us and to many others who know her. Even without speaking a word, she brightens other peoples’ days. It is comforting for me to know that there are other moms out there going through similar emotions.
    Patty

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  8. This is timely for me. Yesterday we (the three kids and I) were grocery shopping. Trent, my 4yo with Ds, has a hard time with grocery shopping, but it has to be done and even though it can turn into a nightmare, I don’t avoid it with him EVERY single time. I figure he needs to habituate to it in order to be able to function in his environment.

    Anyhow, as he got more and more overwhelmed, he began slapping and punching himself in the face and head. I did our usual sensory methods of controlling/helping him when he hurts himself, but he kept doing it. People were staring. I felt that creeping thought of how it must be weird for people to see a child smacking themselves hard enough for red marks.

    “Low-functioning” comes to mind after incidents like that. He is still so limited in his verbal skills. Even when he says common words, he is very unclear. And even though we should know better than to compare our kids with Ds, it happens. There are kids with Ds younger than Trent that are so much more verbal. Sometimes, I think that I might not be trying hard enough; not following up his therapies at home enough, but I work in Early Intervention and have seen some parents that DO NOTHING with their kids. Yet, their kids are still further than Trent.

    Trent is so incredibily affectionate and warm. He is friendly to almost everyone (except in grocery stores obviously) and brings me so much joy just by his smile and his touch. Somedays that is 2000% enough,…especially when I meet some kids who are doing very well verbally/academically/potty training-ly but are not always affectionate or friendly; other days, it isn’t enough. I want the sensory stuff gone and I want some understandable words.

    Gillian, thanks for this. Like I said, it was timely for me. I needed it.

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  9. I struggle. I struggle seeing children with DS just a year older than Paisley who can read, or speak, who can meaningfully engage their family, their peers. Paisley seems to float through this world, smiling, playing, responding to our tickles, our touch but….ugh. I sound like I am whining. Why is it too much to want to communicate with our children? Thanks, Gillian, for writing this.

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    2. I hear you, Renee. I struggle also, then I reprimand myself for whining. I feel bad, but I feel better knowing that others struggle like myself. Why do we feel better knowing that others feel the same? But I thank you for your candidness. I, too, pray everyday that I can communicate with my Samuel. I, too, struggle with seeing DS children the same age as Samuel who can do so much more. I keep reminding myself that I am so lucky that he is warm, affectionate, loving and happy. Thank you Renee. Thank you Gillian. Thank you for sharing your stories and struggles. It really does help in so many ways.

      Reply

  11. I love this…it’s so hard being honest with ourselves sometimes…and then trying to work through all of that…Evangeline is lucky to have you and sounds as low she loves you…and really? who knows what her future holds? At least, that’s what I have to keep telling myself…

    Reply

  12. Although Lily is still too young to determine what her “functionality” will be, I have struggled with how verbal she will be some day. I watch videos of children her age with Ds who are already mimicking many words or using spoken words for the things they need, and Lily struggles just to form one or two words…and even those are very random. I have no idea what the future holds for her, but your post reminds me so much of one I wrote months ago, coincidentally called “Enough.” Thank you so much for sharing your heart here, Gillian. http://babynumber10.blogspot.com/2012/02/enough.html

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  13. The grief that comes with dual dx or having a child who is “low functioning” compared to other children with DS can be so overwhelming somedays. I wish I had a crystal ball that could tell me when those days will happen but alas my magic 8 ball does not. I love the quote “comparison is the thief of joy” and I try to remember that always. The sadness is OK and I embrace those days when the tears flow & I rage against this universe for all that Larkin has to endure and my anger/grief oozes from my pores. Hot showers soothe my face from the tears and Larkin’s smile always turns my frown upside down. Love you G ~ and your courage to share

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  14. Gillian, Parker is non verbal as well. However he is still learning to read, knows his alphabet and is learning his numbers. Sometimes it is more about finding the way your child learns best, if that makes sense. For Parker’s first 3 years he was too sick to do much more than have me hold him and read to him. A zillion surgeries later, he’s doing better, but not healthy enough to go to school. I’m not going to say that teaching him at home is easy. It’s often exhausting. But when that light bulb clicks, it is worth it. It is oh, so worth it. I’d try to remember that those first years of your little one being in that orphanage were much like Parker’s first few years not being healthy enough to get anything out of therapy, etc.

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  15. Beautiful post, as always, Gillian. Your honesty gets me every time. That is one lucky little girl to have such a warm family, and a patient mother just waiting for each little sign of affection, whether it comes or not. I love reading about the baby steps, the moments to celebrate, and the difficulties leading up to the breakthroughs. One step at a time…

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  16. Hey Gillian,
    I hope you remember me from a few years back. We have Veronica who just turned 7 (she has DS) and Ripley who’ll be 3 in November. Please know that V. is just starting to put 3 simple words together in a sentence…and most of the time she must be prompted. As her mother, I can usually understand what she’s trying to communicate, but does anyone else? Probably not….and that’s what worries me about her future. Scott and I know how frustrating it is for V. when she isn’t understood and it breaks our hearts. This is particularly poignant when we’re at the park and the other children lose interest in playing with Veronica because she can’t communicate with them. Much like a previous poster, I’m constantly wondering if we’re doing enough for her outside of school and the extra speech therapies. Making everything a “lesson” in speech skills is exhausting – especially when you have a high-spirited toddler running around who seems to be at the other end of the spectrum (he knows his ABC’s, counts to 30 and says full sentences). Guilt is the word I could use to describe how I feel most of the time and oh how I loathe the adverbs “high functioning” or “low functioning”! When I get really down about V.’s lack of verbal progression, I just think about what an affectionate child she is, her good health and that she’s physically able to run and play and laugh.
    At the end of the day, providing all of our children with a loving home in which to individually thrive is the first step in nurturing the self-confidence and security it takes for them to reach their full potential – whatever that may be. And you are certainly providing that for all of your beautiful girls! Would love to see you all again…my how time flies!

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  17. The profiles will be there if you continue to provide them. I do not think there is an effort to hide or mask – perhaps that’s my naïveté but PLEASE SHARE and share ideas and support. But most importantly share ways that most days it is ENOUGH and some days, nothing is enough. AND THAT IS OKAY TOO.

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  18. I stumbled on your blog post somewhat by accident. I also have a blog about my child with Down syndrome so it was not crazy that I found your post but I was not really looking at this moment either. I enjoyed what you wrote but toward the end you said something that I really connected with.

    You said, “My job is to help Evangeline meet her God-given potential. But I am not the judge of potential.”

    I agree completely. A person’s value comes from their Creator and not but some measurement of his or her “output.” When my son Treyton was born I was given the responsibility to help him develop his God-given gifts and talents. My focus is on making sure he is given the opportunity to grow and develop as much as possible. Then, if there is something he is not able to do I will be there to let him know that it is all good.

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  28. Our Gloria is much like your daughter. Almost 7y funtions at 11 month level..gained a month in the last year! Adopted domestically at 9m. She has come a long way. There are dr appt, therapy, amid all the rest. She has blessed our lives.

    ,

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