Finding A Place For Her: Parenting A Child With Delays

October 18, 2018 adoption realities, Attachment, attachment activities, cocooning, cognitive delay, developmental delays, Developmental System, Education, Family Stories, homeschool, IEP, non-verbal, October 2018 Feature - Developmental, oral-motor delays, public school, SPED class, speech delay, speech therapy, trauma 1 Comments

When we brought our daughter home in the fall of of 2013 we knew she likely had significant, lifelong developmental delays. A mystery girl is how she was described to us. And still, almost five years later, she is a mystery. No real clear cut diagnoses except developmental delays and an MRI thats shows a slightly smaller brain.

She’s also dealt with tremendous trauma in her short life. Because she is nonverbal, it is trauma that she can’t vocalize or talk through. One of our biggest struggles has been finding where she fits, her place in the world and, most specifically, in school.

Sarah came home in November of 2013. I kept her home and very close to me until the following August when we enrolled her in a local preschool. Although she was five years old they allowed us to enroll her in the 3 yr old class. I tried to talk to them about not only her delays but also her trauma: what trauma behavior looks like, how her anxiety manifests itself. But it was still a very hard transition.

Her teacher was great and very patient, but I did not feel that patience from the special education teacher and some of the other staff. I was getting daily reports of how she simply had to learn to talk (four yrs later she is still nonverbal), how she had to go to the potty nicely (four years later she is still not potty trained). These comments were delivered daily in carpool line and were expectations I was sure she couldn’t meet.

One day we were running late and missed the drop off line. I walked her into the school to go to her class and as we walked down the hall I overheard two of the staff members discussing how difficult she was in not so nice ways. I was devastated. Still to this day it brings tears to my eyes. I picked her up and left the school. Apologies were made but I knew she just didn’t belong there. So we went to the next plan.

In November of 2014 we enrolled Sarah in our local public school in a self contained SPED class. Once again things started out pretty well. The rest of that year went fairly well, but I once again began to feel people’s frustration with her and lack of understanding of trauma and how it effects behavior. She is pretty strong willed and also had zero frame of reference for doing “school work”. When I took an end-of-the-year treat to the speech therapist, and got a snarky comment back about how difficult she was, my heart sank.

We started the next school year in the same classroom, but because of life circumstances of the teachers involved there was little consistency in teacher and assistant. That caused a significant amount of stress for Sarah. She is a mystery girl and she is difficult to decipher and the turnover made for assistants who simply didn’t understand her.

And the more anxious she grew, the more difficult her behavior became.

I talked and talked about trauma but when the suggestion was made to bribe her with food to get her to do her work, I knew we were done. We pulled her out in March and began to homeschool her.

For the rest of that school year and the next two full school years we kept her home and very close. She was rarely away from me. And we saw tremendous growth. I struggled with the best way to teach her and she also grew frustrated with me asking her to “do work”, but we persevered. We did lots of life skills, lots and lots of just playing, and lots of actual school. Academic progress for Sarah is painfully slow. Repetition times 1,000 is the name of the game for her and then sometimes it still doesn’t stick and then out of the blue she’ll get it!

I loved having her close to me and watching her grow more secure in her attachment and watching her anxiety settle. She matured so much during those few years. She also struggled with rages and behavior issues (and we still struggle some days with those things although her rages are fewer and she recovers quicker).

She has learned lots of life skills and her academics have come a long way as well. And I’ve enjoyed having her near me. I missed those first five years and I wanted time to just let her be a baby and grow into a girl ready to trust and learn.

This past summer we added another precious daughter to our family. This allowed me to see how much more mature she is than I was giving her credit for. As we started our homeschool for the year I began to see how she was much more excited to be doing her work, how she was not only able to follow a schedule but seemed to flourish with it where before it frustrated her.

But I also noticed that she seemed bored. Homeschool co-ops are readily available in our area but there are none for kids with special needs. Nothing during the day where she could interact with other kids. And I began to realize that it may be time to change things; that she may be ready for more.

Much like a 5 or 6 year old shows signs of being ready for kindergarten, my almost 10 year old, now with us for almost 5 years, was showing signs that she was ready to venture out a little.

But I held on. I wasn’t ready. Like all mothers it’s my first instinct to protect and for me that often means pulling my kids, but especially Sarah, close and closing out anyone who might hurt her. A mamma-shield so to speak.

Letting the world near her scares me because the world has not been kind to her.
An abandonment she likely remembers.
An orphanage full of chaos and hunger and lacking in touch and comfort.
A transition to safety and love that is not without its own amount of trauma.

She has grown and matured so much and functions so well within our home and our church that I was so tempted to simply keep us in this place. It was safe and although she was ready I kept hearing those hurtful words and listening to my own scared feelings and saying no.

But then.

I am in a Bible study at my church on Wednesday nights that is studying the story of Gideon. This particular week was on letting go. The Lord asked Gideon to let go of what made sense and to trust him to deliver a victory. The secret to moving forward was not in retaining but in releasing. And there it was, I guess you could say it was my fleece on the ground. The confirmation that it was time to do a little releasing. Time to let the proverbial apron strings out a little bit more.

For Sarah there will always be apron strings. She will always need to be under someone’s care, she will always need to be advocated for and she will always need to be protected. But it was time to widen the circle beyond our family and church. So I drove to the school one Saturday and I prayed out loud over that school and the teachers and for the Lord to make the way clear.

And He has. He has provided understanding teachers and administration. I also believe that because she is older and her potential and limitations are more clear that everyone’s expectations of her are much more appropriate.

As of this writing she has been in school for about a week. It has gone really well. She loves it and is so excited to go each day. She was standing in my bedroom in her nightgown with her back pack on signing “school” at 6:15 this morning, so enthusiasm hasn’t been an issue. She rode the bus this morning for the first time and that was a little traumatic, but she was all smiles getting off this afternoon and I suspect she’ll be just fine tomorrow now that she knows what to expect.

I know that there will be hard days and hard conversations and hard decisions, but for today I’m going to be thankful for a great start to a new season of life and I’m going to be so proud of how my girl has grown and changed.

She could barely walk and had no language at all five years ago, but today she rode the bus to school and home again. She went to centers and she traced her name. She told me in her own way that she was hungry and that she had fun at school. She also let me know she wants a bath before church.

She may never be typical by the world’s standards and that is fine by me. We think she is extraordinary!

I also want to give a word of encouragement to all the mammas in IEP meetings and making phone calls or just picking their child up into their arms and carrying them out of a place that has failed to see who they really are… you can do this!

I look back now and sometimes think of how I could have been a better advocate for her in those hard days. I wonder if I should have fought harder and stood my ground instead of pulling her home. But my instinct was to pull her close and a mother’s instinct is a powerful God given thing. Listen to it.

I’m so much better at advocating for her now. So much more knowledgable about what our options are. My instincts now are to let her go just a little bit out into the world.

I’ve shed many tears over the fact that there was no place for my girl, but the truth is there is. And it’s my job to help ease her into that place, to help others see her and make a place for her.

Our children with cognitive and developmental needs along with the trauma of being from a hard place need us to learn how to advocate and push for them.

But most of all they need us to remind them everyday that they are safe, and that we will be waiting for them every day when the bus brings them back home.

– guest post by Stacy: email || facebook

One response to “Finding A Place For Her: Parenting A Child With Delays”

  1. Rachel says:

    Beautiful. Thanks for being just what she needs.

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