As much as I would like to tell you that is the only reason for me not writing more, it isn't. The first week we were out here Lucas was running and climbing on our beautiful new community playground and making quick friends with another little boy. I sat there in awe as there was virtually no difference between them, physical size, ability, even communication. Lucas was chatting away telling his friend to "climb again" and "chase me!" The boys were having such a good time, my only concern was to make sure he wasn't going so fast that he got hurt. I saw the little boy's dad watching with interest and I figured it would be a great time to introduce myself and strike up conversation. In one moment my excitement with the events of the day vanished and the doubts and fear I seldom allow in came crashing.
"How old is your son?" I asked. "Just turned 2." He said.
For those of you who may not know, Lucas's birthday is August 30, and he will be 4.
For the next week or so I allowed myself to go to all the places I despise. The literature on developmental delays, neuronal death, plateauing...you name it. I guess I was looking for some answers to the question I had. How could I be doing everything possible and there is still delay? And if the delay I could observe is still there, what about the delays I might not be able to observe? These thoughts left me feeling scared and betrayed, by myself I guess. I suspended all our daily routines and took the time to look at the situation with a fresh set of eyes.
When that got me nowhere, I e-mailed my dear friend Kristen in Australia.
I can not tell you how I value this friend of mine, we have literally 2-3 hours of mutual awake time, live on opposite ends of the planet and have met face to face one time. Yet, hours of searches, conversations, and introspection led me to the one person who would know what I meant without as much as an explanation. In a lengthy e-mail that I know took precious time to write she gave me my perspective back. In fact I realized I never lost it, I just couldn't find it through the fear.
Why on earth would I compare Lucas to a 4 year old peer without T21? I need to compare him to himself and the fact is he has made astounding progress in the past 6 months..in all areas. I have never denied the impact of that extra chromosome, in fact it was out of respect for it that initially led us on this journey. Why then did I feel blindsided?
It was my ever failing quest for patience. In my mind results are directly related amount of effort...NOW. I lost sight of the fact that the goal was not for Lucas to walk at 14 months, or talk at 16 months, or communicate like a 4 year old at 4 years old. The goal is outcome based. Lucas did not walk until 22 months, but his gait pattern is perfect. All the diligence we paid to positioning, weight bearing, and normalized sensory input paid off. His speech is coming slowly, but he has good articulation, inflection and oral motor structure. His communication is slow because of the spoken word, but the higher executive functions like eye contact, conversational turn taking, and humor are all in place. It isn't important that he talks tomorrow. When he graduates from high school with a traditional HS diploma, it wont matter if he talked like a 4 year old at 4 years or 6, he will be an equal peer then, that is the goal.
This is also besides the point of everything he does that is ahead of schedule. Things like cutting with scissors, reading, learning, remembering, generalizing, on and on.
In the end, our program is stronger than ever, Lucas has two lovely young ladies (who he adores) come twice a day to pattern with him, he has mom reading and teaching all sorts of fun things like Western Lowland Gorillas and famous pieces of art. He has Noah and Ryan chasing him around the beach, playground, and community. He has a summer I could only have dreamed of as a kid, and I was losing this wonderful time with him worried about the future that will get here all too quickly.
Between patterning, reading, creeping, crawling, beach-ing, running, playground-ing, baseball-ing, soccer-ing, I was trying to think what else I could add. But then again...
Thank you for sharing this. I think I can understand how you feel. I feel sometimes like since my daughter is doing so well that we're conquering this chromosome thing and in the future no one will even know it was there. Then today I got reminded that she has some of the typical DS facial features, which to be honest, I barely even notice any more. It made me sad and a little worried because I just want people to see her as the beautiful little girl that she is. I forgot people would be able to tell even if her behavior was entirely "normal". Hmmph... Hopefully by the time she graduates college, some of the prejudice will be gone. You have a great attitude and it helps me, just so you know. :)
ReplyDeleteI'm so glad you finally posted again!