Whether you are a new parent or repeat parent, you will find yourself getting caught up in the excitement of your childs’ milestone achievements. You celebrate all their firsts. You anticipate their next accomplishment and try and wait for it as patiently as you can. Because as they meet each one, two things happen: 1. We know they are okay, they are ‘normal’ and 2. They get more and more fun and beginning turning into little people, not babies. Everything is wonderful until the word DELAYED enters your world.
Delayed is a scary word followed by lots of unknowns. Some things you don’t even know that you don’t know. If you are a parent of a child that has DS, then this was one of the first words you heard about your child.
We were told that Lily will be delayed in motor, speech and cognitive skills. As she accomplished each early milestone, we celebrated just as any parent. Lily was on time for all of her early milestones (rolling over, smiling, laughing, sitting up, babbling, etc). When she was learning to crawl, we got our first glimpse of how hard it seemed for her to learn it. And then how she had to practice extra hard to get the strength to go very far. So when she first crawled across the room, we celebrated hard, like she just cured cancer kind of celebration.
We felt good, Lily felt good, life was good. Her therapists all said she was developing on time and even a little ahead of schedule on her cognitive and speech abilities. Then suddenly everything changed.
As Lily was learning to cruise and preparing to take her first steps- we notice that she had plateaued, meaning she hadn’t made any real progress in many months. She had lost her motivation somewhere. Now, I will say here that we knew she would be delayed in walking at least by a little bit. They consider one delayed if not walking by 18 months old. But she had been doing so well, we weren’t prepared for what a delay would be like for her and for us.
My first glimpse into how a delay could affect my daughter, literally broke my heart. Since almost all of Lilys’ friends are walking, she can no longer keep up with them. There came a day when she was attending a party with some of her walking friends and once they took off outside to play, Lily was stuck playing alone- the look on her face when all her friends left and she realized that she couldn’t keep up with them, would make any mother’s heart ache. Since that incident and others like it, she has lost her confidence around others. My sweet, social little girl is now a shy, insecure one.
DELAYED. This word looks and feels so different to me now. Now I understand what this word can mean. Lily will walk and do all the things others can and sometimes she will be on time, or even ahead and she will most likely be delayed too.
Walking is so hard for her, not because she can’t do it but because she is scared to walk, scared to fall. We are working very hard to give her the security and confidence to achieve her desire. As parents, that is part of our sacred duty. No parent wants to see their child struggle or feel defeated, but we all will. Maybe as a special needs’ parent, we just see it earlier than others but struggles are a part of everyone’s life.
Celebrate your children’s strengths and encourage them through their weaknesses. You can bet we will be celebrating loud and proud when Lily takes her first brave steps!