I spoke at church this morning and shared a little bit of our journey. I was so nervous. I have been talking to myself every chance I get; while doing the laundry, dishes, and every car ride to and from therapy appointments.
When our Pastor approached me and asked to share I was excited for the opportunity. I will never turn down a chance to talk about my boys, especially my little super hero. This morning as I was preparing I just kept praying that I would do our story justice and have the ability to articulate exactly how I feel. I know the diagnosis and steps leading up to where we are like the back of my hand, but expressing just how grateful we are and how much our perspective has shifted is something I was worried about.
I truly believe that I live a life of gratitude. We don’t take anything for granted, especially when it comes to Christopher. Everything he does is celebrated. We focus on the positives and not the negatives. I don’t dwell on what he is not doing but rather celebrate what he IS doing. Just this week his occupational therapist told me that she thinks he is trying to mimic her clapping. She believes he is trying to clap for himself when she does it! I am overjoyed.
I am so grateful to have the opportunity to share our story today and share our Cape Crusade. We are making super hero capes to help with the costs of Christopher’s upcoming therapy in California. If anyone is interested in a cape you can email me at firstname.lastname@example.org 🙂 Our crowdrise fundraiser is also https://www.crowdrise.com/christopherscrusade
We choose JOY. We choose not to let our circumstances get in the way, but rather celebrate everything we possibly can.
https://www.facebook.com/teamchristopher1/ is also Christopher’s FB page for those of you who would like to follow him on Facebook.
At a recent speech therapy appointment our son’s therapist looked at me and said something I wasn’t prepared to hear. She said “I don’t think I can help him.” I was taken aback and was confused at what she was saying. Then she said I don’t want you to think I’m giving up. I didn’t know how to answer, I didn’t know how to tell her that yes I did believe she was giving up on my son. I wanted to say that she’s only had 5 sessions with him and how could she possibly know at that moment that she couldn’t help him. She said we could give it a few more tries but it was difficult for her to tell me that she really didn’t think we should continue.
He doesn’t talk. He makes silly sounds, blows spit bubbles, and says “mamamama.” He can’t say the words to tell me what he wants or needs, but he surely can communicate. He is extremely smart and knows what I’m talking about. His face lights up when I ask him if he wants to go read a book. He instantly starts crying when I lay him on an examination table at the doctor’s office. He waves good-bye when I ask him to, but sometimes it’s long after the person has walked out the door. On his picture board when given two choices he reaches out to choose the toy he would like to play with. We even had to do away with iPad photos because that was his choice over and over. 😉 He stops crying and gets a huge grin when the words ALL DONE are uttered at therapy. He most definitely can communicate.
Yesterday when we went to speech as we were walking back to the room I said to his therapist “I think we need to talk about my goals for speech and what you said a couple of weeks ago.” She was extremely willing to hear me out and understood where I was coming from. I told her that I want him to have a “voice.” I want him to have a say in his life. I want him to be able to communicate those needs in the best way possible. I also want him to know that other people are safe and he can learn from them and not just me. To say he is a “mama’s boy” is an understatement.
I don’t know if he’ll talk. I have no idea if all he’ll ever do is blow spit bubbles and say “doit doit doit” with his cute little lips. Of course I would love to hear his sweet voice and have a conversation with him. I so badly want to hear him say I love you. But more than anything I don’t want to always lead his life. I want him to be able to make decisions without me, whether it’s an eye gaze or touch and hopefully someday his actual voice.
He had a fabulous speech session and I could even see the joy in his therapists face when he reached for pictures to make choices. He just needed to show her and I needed to help him do it. This was a huge lesson for me. I need to realize that many other people don’t see him as I see him. They don’t know him and it’s my job to make his capabilities very clear. They see an almost 3 year old who is extremely developmentally delayed and incapable of so many things; not a bright, silly, strong, determined little boy. As his session neared the end I walked in the room and his therapist was extremely pleased and we chatted for a few minutes about how well he did; he even had a big grin as if to say “I showed her!”
As I took his hands and made the sign for all done and said the words he giggled and smiled and knew exactly what I was saying. He may not talk but he’s pretty great at communication.