Ronin and Daddy were gone for most of the day at his T-ball practice, pool time, and running errands. I haven’t had a day with just CiCi and I in months!! I took her to our condo pool for a few hours. She loves observing everyone in the pool and waving hi to all the kids passing by. She does a great job walking inside the pool which helps her core strength and then floating on her pool noodle to get those legs kicking. When she said “all done”, we relaxed in the jacuzzi before heading back up home. After lunch, I took her to the park so she can go run around and play. But instead, she took my hand and we walked around the entire perimeter of the park, went on the swings, and slides until she verbalized she was “all done”. During our walks, I asked her what she was thinking, how she was feeling, what did she enjoy most about the pool, and I got smiles or a cute eye glance as we keep walking…I wish I knew what was going on inside her head. Going to the park and walking around is something she hasn’t done willingly in a few months. She’s been having tantrums during her transitions lately, so this was such a happy day for her and for me! I used the PECS system so I can show her what the schedule was from place to place and that I think that has helped alot!!
After dinner CiCi went to her usual spot by the window and watched the world go by. She can spend hours sitting here watching people come and go. I often sit next to her in silence – because I don’t know what else to say and although I know she loves hearing our voices….I’d love to hear hers too. I don’t know what she really wants, or likes – sometimes she looks unhappy and I don’t know why – I don’t even know her favorite color or song. My reality as a mom and her advocate is to be patient for vast amounts of time. Be patient when she refuses to walk the direction I want her to, be patient when she doesn’t want to go places we want to go – be patient when she doesn’t play “functionally” with her toys and throws it all over the place. And it’s not always easy being patient. I have to pick and choose my battles. I do get frustrated. And when I do show it, I sometimes get a big eyed look that reminds me how unfair this all is.
I’m thankful that today was a great day. No tantrums. Our PECS schedule worked today. She held my hand throughout the park and took me for a walk. I asked her questions about how she is feeling…and she smiled and held my hand. Although I don’t know what she was thinking about when she was looking out the window today, I do know that today was a great day and her hugs and smiles proved it.
*tears* such a lovely post, Cheryl. Thank you for letting us into a glimpse of your special day with Cici. Thank you for sharing a glimpse of your world. Love you both very much.
Sounds like a great day with CiCi! You’re doing a great job parenting, Cheryl (and Mel). The devotion you provide has and will always pay for the future days.
Tears indeed! Ciana’s story is deeply touching and moving. Cheryl, your words and perspective took me to a place of great empathy and brought me to realize how strong, beautiful and unique your relationship is with Cici. I also realized how Cici must have an immense amount of patience with each of us on a daily basis trying to get us to understand her in her world. Reading this made my heart hurt in such a good way. Thank you for that. ❤️
I look forward to reading more.
Thank you for sharing her story. I’m glad you guys had a great day together!
Cheryl, I can honestly feel your pain, not knowing what your child is feeling, not knowing her thoughts. Although my son has autism, our children share many similarities. I believe you have time on your side with all the on-going new research. The schools also are more supportive with newer innovative social and behavioral programming, not to mention the ever changing digital support for our kids. CiCi is SO fortunate to have such a wonderful loving and supportive family and social network. That’s half the battle. From my experience, positivity and consistency are the key to success, but patience helps when there’s the occasional setback. Hang in there. you’re doing a GREAT job!
We are so blessed that you shared your story – we would love to hear more of your journey and experiences you have with Cici- being so far from you guys is hard but hearing your inner thoughts and feelings about your precious ones is great- we are all blessed in different ways and sometimes we don’t know how to explain our blessings but do know that our children are sent from God, and they teach us so much in what path He has for us!
Thank you for sharing CiCi’s story. Its heartbreaking to see how much you want into her thoughts, but I KNOW she knows how much you and Mel love her. You have both had lots of success on CiCi’s path. Keep up the excellent work.