Just As You Are

October 24, 2017 cognitive delay, developmental delays, Developmental System, homeschool, non-verbal, October 2017 Feature - Developmental, sign language, speech therapy 6 Comments

I left church early this past Sunday. For some reason the transition from Sunday school to big church has been difficult for our daughter for the last month or so.

She is non-verbal and, although she is mine, cannot communicate to me what is making this transition so hard. Usually I can pull from my bag of tricks and get her calmed down enough to make it through church, but this Sunday I was tired. So I picked her up and headed for the car. I strapped her in and we pulled out of the parking lot and – half a mile down the road – she was singing in her sweet, sing-song voice.

Feeling safe and secure again she sang and sang while I just cried the whole way home.

I cried because even after nearly four years, sometimes I can’t make her feel safe.
I cried because she can’t tell me what’s wrong, and the truth is she most likely never will.
I cried because I do know some of the reasons she feels scared and anxious and on guard and I would do anything to take those memories from her.

And, to be honest, I cried for me too. I so badly needed to worship that morning. For a month or more I had spent the service quietly soothing and rocking and holding and comforting a very anxious child. I wanted her to sit quietly and color while I worshiped and was taught. I wanted to visit with friends after the service and just enjoy the morning. But for now she needed her world brought small again. Needed to be reminded it was okay and she was okay. And for her, that looks like being at home.

Parenting a child with significant cognitive delays can be challenging. There are days, like Sunday, when I wish I could take it all from her and we could just be “normal.” But you know what? Then she wouldn’t be Sarah.

And oh my goodness how we love this girl.

Do you know what she did this week? She tapped me on the shoulder in the car and said, “Mamma!” and signed “help” as she tried to open a snack. She put together matching cards all by herself! She made a birthday cake out of Playdough with no prompting at all and then clapped her hands and gave her sing-song version of Happy Birthday.

She has started climbing into my lap and actually listening to whole books being read to her. She helps me fold laundry and bring in the bags of groceries from the car. This week she put away all the groceries alone. She put them in the right place and she did so without opening any packages. A huge milestone for my girl who still struggles with food issues.

Parenting a child with cognitive delays requires us to be creative. School has been challenging for her. She is so highly anxious at times and it can manifest in frustrating behavior.

No amount of trying to explain trauma and anxiety was working so we brought her home. Can she sit and do “school work” for a few hours a day? Absolutely not! But she is learning! When regular doctors have not taken us seriously we have found natural doctors who will listen and try to help her. We’ve seen huge improvements with changes in diet and the addition of supplements.

Traditional therapies are very frustrating for her and therefore frustrating for the therapist. We’ve reduced our therapies to just speech. Her speech therapist is one of the few people that really “gets” her and we are so thankful for her. We are excited to be adding hippo-therapy in the next few weeks. We think this is going to be great for her.

Every day little by little, more and more of her is being unlocked. More and more we see the anxiety settle and the precious child she is emerge.

We didn’t set out to adopt a child with cognitive delays. We didn’t set out not to either. We just started the process and a few months in we found her. We knew the possibility was high that she would live with us forever but we also knew she needed and deserved a family and we were sure we wanted to be that family.

I know cognitive delays sound scary. I know having a child be dependent for life is not the “American Dream.” It is hard to have people not understand your child. It can be hard to have people who are supposed to help her only be frustrated with her. And it can be a lonely road.

But oh my goodness. What joy there is!

What rejoicing as new skills are learned, as she gains the ability to communicate in her own way. What amazing joy when we see her relax and feel safe and loved. To see her know her people and to know where she belongs. To see her enjoy things and to see people be happy to see her and to begin to see what we’ve seen all along.

So next Sunday we will go to Sunday school. She loves church so much. It’s her favorite place besides home and the park. It’s a word we spell instead of say because if she hears the word she starts gathering everyone’s Bibles and herding us to the car. We will go to Sunday school and then we will head home. We will take a break from big church for a few weeks and give us both a break from trying to manage that. We will turn up the music in the car and we will worship in our own way. And in a few weeks we will try again.

And I suspect that’s all she will need. And she will realize again that this is a safe place and she knows how it works and it will be ok. And then she will sing song really loud in church and swing her arms really big when we hold hands at the end and run to find her siblings among the youth and dance down the aisles again.

And that is a beautiful part of parenting isn’t it?
Meeting them where they are…
Bringing them close.
Making the world as small as they need it and then slowly showing them again that they can venture out a little and we will be right there.
Reminding them as often as needed that this is real and permanent and safe. That there is enough food, and if you get scared at night you can crawl in my bed.

And that you are fearfully and wonderfully made – just the way you are.

– guest post by Stacy: email || facebook

6 responses to “Just As You Are”

  1. Jessica says:

    Thank you Thank you Thank you for this. This is our life also. Your ride home from church has happened to me so many times. The similarities with your world and mine are astounding, and we feel the same. We search for people who “get” her. She has a few such angels! Our daughter is such joy and we can’t imagine life without her. Thanks again. You brought my emotions to the surface. We are definitely not a “normal” family but that’s okay and we are so much better and have more empathy because of her.

  2. Elizabeth says:

    Made me emotional, sweet mama! I sure love that Sarah, far as we are! And gosh we may not have the non-verbal piece, but you know what? SO much of that has been and is our world. Totally hear you 💜

  3. Charlotte Walters says:

    I am a freind of Beck’e! Thank you so much for sharing your heart with all of us! Special people are called to be a parent to a child as special as she is!
    You’ll (your family) will one day sit at Jesus feet and he will say

  4. Brett says:

    Thank you, Stacy.

    Posts such as this one help lots of us who don’t have kids at all: Maybe the next time someone I don’t know is a little loud or “off” in some “un-smooth” way, some filed down way we’re taught to be, expect in others, etc, maybe I can see fearfully and wonderfully made. In those moments, just my understanding may be the blessing a stranger needs.

    But in this moment? I see such beauty in the eyes of your child -and such happiness. And where, Lord, would she be if you hadn’t found her?

    NHBO has broadened my world. I can only hope I do justice to what I’ve learned here over the past few years – not only about special needs adoptions, but about faith and new kinds of “normal” – whatever that might be.

  5. Andy says:

    “It can be hard to have people who are supposed to help her only be frustrated with her. And it can be a lonely road.”

    Good stuff.

  6. Anna Thomas says:

    I know this was a couple of years ago, and I just wanted to thank you for your post! I’m an adult, but I suffer from PTSD and I usually cannot go to Mass. I’m just too scared of the many, many other people. It’s so so frustrating, and I struggle with shame, so it was lovely and so healing to hear your love and understanding for your daughter!

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